Tag: Annette Logan-Parker

The Pediatric Oncology Care Team: Every Role Explained

Posted on by Jennifer Glover

Key Takeaways:

  • Your child’s cancer care involves a full team, not a single doctor. A pediatric oncology care team typically includes oncologists, nurses, nurse practitioners, social workers, child life specialists, and other professionals who collaborate on every aspect of your child’s treatment and well-being.
  • Each team member serves a distinct purpose. From the oncologist directing the treatment plan to the child life specialist helping your child cope through play, every role exists to address a specific medical, emotional, or practical need.
  • Multidisciplinary care is linked to better outcomes. Research shows that children treated by coordinated, specialized teams at pediatric cancer centers have better survival rates and quality of life than those who receive fragmented care.
  • You are part of the team too. Parents and caregivers play an active role in their child’s care, and knowing who does what helps you ask the right questions and advocate effectively.

When your child is diagnosed with cancer, you’re suddenly surrounded by new faces — doctors, nurses, specialists, and support staff — each introducing themselves with titles you may have never heard before. It can feel overwhelming. But every person on your child’s care team is there for a reason, and understanding who they are and what they do can help you feel more grounded during one of the most disorienting experiences a family can face.

A pediatric oncology care team is a group of specialized healthcare professionals who work together to diagnose, treat, and support children with cancer. Unlike adult oncology, pediatric cancer care requires providers trained specifically in how cancer behaves in growing bodies and developing minds — and how to deliver treatment in ways that protect a child’s long-term health, development, and quality of life.

At Cure 4 The Kids Foundation, Nevada’s only dedicated outpatient pediatric cancer and rare disease treatment center, this team-based approach is built into every aspect of care. Here’s who you’ll meet and what they do.

Who Is On a Pediatric Oncology Care Team?

A pediatric oncology care team brings together medical, psychological, and supportive care professionals under one coordinated plan. While the exact team composition varies by center and diagnosis, most pediatric oncology programs include the following core roles.

Pediatric Oncologist (or Pediatric Hematologist-Oncologist)

The pediatric oncologist is typically the physician leading your child’s cancer treatment. These doctors have completed specialized fellowship training in childhood cancers and blood disorders, which means they understand how pediatric cancers differ biologically from adult cancers and how to select treatments — including chemotherapy, immunotherapy, and targeted therapies — that account for a child’s growth and development.

Your child’s oncologist directs the overall treatment plan, orders and interprets diagnostic tests, coordinates with other specialists, and monitors your child’s response to treatment over time. At Cure 4 The Kids Foundation, board-certified pediatric hematologist-oncologists lead every patient’s care.

Nurse Practitioner (NP) or Physician Assistant (PA)

Advanced practice providers — nurse practitioners and physician assistants — work alongside the oncologist as part of the primary care team. They conduct physical exams, help manage symptoms and side effects, adjust medications, order labs, and often serve as a consistent point of contact for families between physician visits. For many families, the NP or PA becomes one of the most familiar and trusted faces in the clinic.

Pediatric Oncology Nurses

Pediatric oncology nurses provide direct, day-to-day patient care. They administer chemotherapy and other medications, monitor vital signs, manage central lines and ports, educate families on home care procedures, and watch for complications. 

That said, the relationships they build with patients and families often make them one of the most trusted and familiar faces in the clinic. Research shows that oncology nurses are often among the first to notice signs of emotional distress in their patients — and that awareness is a critical part of the care chain, connecting families to the specialized behavioral health support they may need.

At Cure 4 The Kids Foundation, the nursing staff also specializes in complex and chronic infusion therapy, caring for patients whose treatments can range from a quick injection to a full-day infusion session.

Social Workers

Social workers are trained to address the practical and emotional challenges that come with a childhood cancer diagnosis. They conduct family needs assessments, connect families to community resources, help navigate insurance and financial assistance, provide therapeutic support, and intervene when safety concerns arise.

At Cure 4 The Kids Foundation, licensed social workers screen for family stressors, coordinate case management, and help assess patients who are transitioning to adult medical care, making sure no family faces these challenges alone.

Child Life Specialists

A certified child life specialist (CCLS) is a healthcare professional trained to help children understand and cope with the stress and anxiety of medical treatment. They use therapeutic play, age-appropriate education, and creative activities to help children process their diagnosis, prepare for procedures, and maintain a sense of normalcy during treatment.

For a 4-year-old, that might look like practicing with a cloth doll before a port access. For a teenager, it might mean having someone explain a treatment change in terms that respect their growing autonomy. Child life specialists also often provide support for siblings, who are often deeply affected by their brother’s or sister’s diagnosis.

At Cure 4 The Kids Foundation, child life specialists are on-site during infusions and treatments, bringing activities to the bedside and helping children find moments of comfort and even fun during long clinic days.

Clinical Neuropsychologist or Behavioral Health Provider

A cancer diagnosis affects more than the body. Clinical psychologists and behavioral health providers support the mental and emotional health of patients and their families throughout treatment. They screen for anxiety, depression, and trauma-related stress; provide coping strategies; and offer therapeutic interventions tailored to the developmental stage of the child.

Cure 4 The Kids Foundation’s Behavioral Health Department brings together neuropsychology, social work, and child life services under one coordinated program. The team participates in multidisciplinary case conferences, screens for safety risks, provides bereavement support, and ensures that psychological health is woven into every aspect of patient care.

Clinical Pharmacist

Clinical pharmacists play a critical behind-the-scenes role. They prepare and verify chemotherapy and other medications, calculate dosages appropriate for a child’s size and weight, monitor for drug interactions, and educate families on medication schedules and side effects. In pediatric oncology, where drug dosages must be precise and protocols are complex, the pharmacist is an essential safety check.

At Cure 4 The Kids Foundation, we have a pharmacy and pharmacists on-site so parents don’t have to travel to fill prescriptions for their kids somewhere else.

Radiologist and Imaging Technologist

Radiologists and imaging technologists use tools like X-rays, CT scans, MRIs, PET scans, and ultrasounds to help diagnose cancer, monitor tumor response, and guide treatment decisions. Some centers also have interventional radiologists who perform minimally invasive, image-guided procedures. These imaging specialists work closely with the oncology team to ensure the most accurate, up-to-date picture of your child’s condition.

Radiation Oncologist and Pediatric Surgeon

Depending on your child’s diagnosis and treatment plan, the care team may also include a radiation oncologist, who uses targeted radiation to shrink tumors and destroy cancer cells, and a pediatric surgeon, who performs biopsies, tumor removals, and other surgical procedures. Both of these specialists coordinate with the oncologist to time interventions for maximum effectiveness while minimizing impact on a child’s development. 

Laboratory Team

The laboratory team processes blood samples, biopsies, and other diagnostic specimens that guide treatment decisions. Cure 4 The Kids Foundation’s on-site CAP-accredited laboratory (accredited by the College of American Pathologists) ensures that diagnostic results meet the highest standards for accuracy and reliability — a distinction shared by a select group of laboratories nationwide.

On-Site Educator

Many pediatric cancer centers recognize that treatment can disrupt months or even years of a child’s education. Some centers, including Cure 4 The Kids Foundation, address this through on-site classroom partnerships. C4K collaborates with the Clark County School District to provide continuity of education during treatment, helping children keep up with their schoolwork so they can transition back to the classroom more smoothly when they’re ready.

Why Does a Team Approach Matter in Pediatric Cancer Care?

Childhood cancer is not one disease — it encompasses more than a dozen major types and many more subtypes, each with its own biology, treatment protocols, and long-term considerations. No single provider can address all of these dimensions alone.

Research consistently shows that multidisciplinary team care improves outcomes for children with cancer. That’s why the Children’s Oncology Group (COG), which includes member institutions like Cure 4 The Kids Foundation that treat approximately 90% of children diagnosed with cancer in the United States, has established formal guidelines requiring multidisciplinary teams as a standard of care.

The overall five-year survival rate for childhood cancers in the United States has risen from 63% in the mid-1970s to 87% between 2015 and 2021. That progress is the direct result of collaborative, team-based approaches to research and treatment.

How Can Parents Work Effectively With Their Child’s Care Team?

You are a member of your child’s care team. It’s completely normal to wonder what to do when your child is diagnosed with cancer. Here are some practical ways to engage:

Ask each new provider to explain their role. It’s completely appropriate to say, “Can you tell me what you do and how you’ll be involved in my child’s care?”

Keep a notebook or digital file with names, roles, and contact information for every provider. During treatment, you’ll interact with many different people, and having a reference helps you direct questions to the right person.

Don’t hesitate to ask your social worker or patient navigator for help with anything outside of medical treatment — transportation, financial assistance, school accommodations, or emotional support. That’s exactly what they’re there for.

And remember to always speak up when something doesn’t feel right. Your knowledge of your own child is irreplaceable, and care teams rely on parents to report changes in behavior, appetite, energy level, and pain.

Frequently Asked Questions About Pediatric Oncology Care Teams

The pediatric oncologist, also known as a pediatric hematologist-oncologist, typically leads the treatment plan and coordinates care among all other team members. This physician has specialized training in childhood cancers and blood disorders.

A child life specialist is a certified healthcare professional who helps children cope with the stress and anxiety of cancer treatment. They use therapeutic play, age-appropriate education, and creative activities to help children understand their diagnosis, prepare for medical procedures, and maintain developmental progress during treatment.

Children with cancer have complex medical, emotional, and developmental needs that no single provider can address alone. Multidisciplinary teams coordinate treatment across specialties, which research has linked to improved survival outcomes, fewer complications, and better long-term quality of life for patients.

Social workers in pediatric oncology help families navigate the practical and emotional challenges of a cancer diagnosis. This can include connecting families to financial assistance, providing therapeutic support, coordinating community resources, and conducting safety screenings.

Not necessarily. The specific composition of your child’s care team depends on their diagnosis, treatment plan, and individual needs. Your child’s oncologist will determine which specialists should be involved and when.

About the Author: Annette Logan-Parker brings over 30 years of experience in pediatric oncology to her role as Founder and Chief Advocacy & Innovation Officer at Cure 4 The Kids Foundation. She has dedicated her career to improving outcomes for children with cancer and ensuring equitable access to cutting-edge treatments for all families.

Clinical Trials for Pediatric Cancer: What Every Parent Needs to Know

Posted on by Jennifer Glover

Key Takeaways:

  • Pediatric cancer clinical trials are carefully designed, federally regulated research studies that test new or improved treatments for children with cancer. 
  • Child cancer clinical trials are not experimental in the way many parents fear — every treatment used in pediatric oncology today was first proven safe and effective through a clinical trial. 
  • Children who participate in clinical trials are closely monitored by specialized medical teams, and parents have the right to withdraw their child at any time. 
  • Participation in child cancer trials at Cure 4 The Kids Foundation is always voluntary, and your child’s oncology team will help you understand whether a trial is a good fit for your family.

If your child has been diagnosed with cancer, your oncology team may talk to you about clinical trials. For many parents, that phrase brings up more questions than answers…and sometimes, real fear. You may wonder whether clinical trials are safe. Whether your child would be treated like a “guinea pig.” Whether saying yes or saying no could change everything.

Those feelings are completely understandable. And the truth is, pediatric cancer clinical trials are one of the most important reasons childhood cancer survival rates have improved so dramatically over the past several decades. Understanding what clinical trials actually are, how they work, and what your rights are as a parent can help you feel more confident navigating one of the hardest decisions you may face.

Child talking to his doctor during a pediatric clinical trial

What Is a Pediatric Cancer Clinical Trial?

A pediatric cancer clinical trial is a research study designed to evaluate whether a new treatment — or a new way of using an existing treatment — is safe and effective for children. Clinical trials may test new medications, new drug combinations, innovative surgical approaches, radiation techniques, or supportive care strategies. They follow a strict protocol, or study plan, that outlines exactly how the trial will be conducted, who is eligible, and what outcomes researchers are measuring.

Clinical trials are the standard pathway through which medical treatments are developed and approved. Every chemotherapy drug, every targeted therapy, and every treatment protocol used in pediatric oncology today went through this process first. Without clinical trials, the treatments your child’s doctors are using right now would not exist.

Why Are Clinical Trials So Important for Children with Cancer?

Childhood cancer is biologically different from adult cancer. Children’s cancers tend to affect fast-growing tissues like blood, bone marrow, and the nervous system, and their developing bodies respond to treatment differently than adults do. That means children need treatments specifically studied in pediatric populations — not simply scaled-down adult therapies.

In the mid‑1970s, only about 60% of children with cancer in the United States survived at least five years; today, thanks to decades of cooperative clinical trials and advances in surgery, chemotherapy, radiation, and supportive care, more than 80–85% do. That progress did not happen by accident. It happened because families before you chose to participate in studies that ultimately became the standard of care for children diagnosed after them.

Children with cancer have much higher clinical trial participation than adults. Historical estimates suggest that around 60% of pediatric cancer patients treated at major centers enroll in clinical trials, whereas only about 5–7% of adults with cancer participate in treatment trials. This high participation rate is one of the key reasons childhood cancer research has advanced as rapidly as it has.

Is It Safe for My Child to Participate in a Clinical Trial?

This is one of the most common and important questions parents ask, and it deserves a direct answer. Yes, pediatric cancer clinical trials are designed with your child’s safety as the top priority.

Before any clinical trial reaches your child’s bedside, it goes through extensive review. New treatments are first tested in the laboratory and often in adult patients before they are evaluated in children. Before a pediatric cancer clinical trial can begin in the United States, an independent Institutional Review Board (IRB) must review and approve the study to ensure children’s rights, safety, and welfare are protected. Trials are then monitored throughout their duration by medical teams, data safety monitoring boards, and regulatory agencies.

Your child’s oncology team will never recommend a trial they believe would put your child at unnecessary risk. And importantly, you can withdraw your child from a clinical trial at any time, for any reason, without it affecting the quality of their ongoing care.

Will My Child Be a “Guinea Pig”?

This is perhaps the most common fear parents express, and it is completely understandable. The short answer is no.

Children in pediatric cancer clinical trials are not denied proven treatments. In most pediatric oncology trials—especially the common Phase 3 studies—children receive the current best‑available therapy, and the trial compares that standard approach with a carefully designed variation that researchers hope will further improve cure rates or reduce side effects. In many cases, children treated on a clinical trial receive care that is equal to or potentially better than the existing standard of care.

Clinical trials include extra safety checks on top of the close monitoring children already receive during standard cancer treatment. Because trial protocols spell out regular visits, tests, and symptom reporting in detail—and because side effects must be carefully tracked and reviewed—children in trials often have more structured check‑ins and closer watch for problems, which can help the team spot and respond to complications quickly.

The word “experimental” can sound alarming, but in clinical research, it simply means the treatment is being formally studied. It does not mean your child’s care is a guess.

A researcher working on a clinical cancer trial

What Are the Different Phases of Clinical Trials?

Clinical trials follow a structured progression designed to build evidence at every step.

Phase 1 trials involve a small number of participants and focus primarily on safety. Researchers are determining the appropriate dose and identifying potential side effects. These trials typically enroll 10 to 30 children.

Phase 2 trials expand the group and begin evaluating whether the treatment is effective against a specific type of cancer. These studies may last several months to a few years and typically involve 30 to 60 pediatric participants.

Phase 3 trials are the largest and most common in pediatric oncology. They compare the new treatment against the current standard of care, often involving hundreds or even thousands of patients across many institutions. The majority of children who participate in clinical trials at pediatric cancer centers are enrolled in Phase 3 studies.

Phase 4 trials take place after a treatment has already been approved. These studies continue to monitor long-term safety and effectiveness in broader populations.

How Do I Know If My Child Qualifies for a Clinical Trial?

Eligibility for a clinical trial depends on several factors, including your child’s specific diagnosis, the stage of their cancer, their age, previous treatments they have received, and their overall health. Each trial has defined inclusion and exclusion criteria that outline who can participate.

Your child’s oncology team is the best resource for understanding which trials may be available and appropriate. At specialized pediatric cancer centers, doctors routinely screen patients for clinical trial eligibility and will discuss options with you as part of your child’s treatment planning.

If your child’s current treatment center does not offer a trial that may be a good fit, your oncology team can help you explore options at other institutions. Resources like ClinicalTrials.gov, the National Cancer Institute (NCI), and the Children’s Oncology Group (COG) also maintain searchable databases of active pediatric cancer trials.

Cure 4 The Kids Foundation is a proud member of the Children's Oncology Group (COG)

What Is the Children’s Oncology Group (COG)?

The Children’s Oncology Group is the world’s largest organization devoted exclusively to childhood and adolescent cancer research. Supported by the National Cancer Institute, COG is a network of more than 200 member institutions — children’s hospitals, cancer centers, and university medical centers — that collaborate on clinical trials and research studies.

COG develops and coordinates clinical trials across its member institutions, meaning that a child treated at a COG-affiliated center in Nevada can access the same cutting-edge protocols available at major research hospitals nationwide. Nearly every child diagnosed with cancer in the United States will receive care at a COG member institution at some point during their treatment.

What Should I Ask My Child’s Doctor About Clinical Trials?

When your child’s oncologist discusses a clinical trial, you have every right to ask detailed questions. You are your child’s advocate, and understanding the trial fully is part of that role. Questions to consider asking include: 

  • What is the goal of this trial? 
  • What treatment will my child receive, and how does it compare to the standard of care? 
  • What are the possible risks and side effects? 
  • How will my child be monitored during the study? 
  • Will we have extra appointments or tests? 
  • Can we leave the trial if we change our mind? 
  • What happens to my child’s care if we say no? 
  • Will there be any additional costs to our family?

Your oncology team should walk you through the informed consent process thoroughly. Research shows that parents generally find direct conversation with their child’s doctor more helpful than the written consent documents alone. 

Take the time you need. Ask every question. There is no such thing as a question too small when it comes to your child’s care.

What if I Decide a Clinical Trial Isn’t Right for My Family?

Participation in a clinical trial is always voluntary. Choosing not to participate — or not being eligible — will never affect the quality of care your child receives. Your child will continue to receive the best available standard-of-care treatment regardless of your decision.

Some families find peace in contributing to research that may help future children. Others decide that the structure or requirements of a particular trial are not the right fit for their family at that moment. Both decisions are valid, and your oncology team will support you either way.

Frequently Asked Questions About Pediatric Cancer Clinical Trials

A pediatric cancer clinical trial is a research study that evaluates whether a new treatment, drug, or approach is safe and effective for children with cancer. These studies follow strict protocols and are reviewed by independent ethics boards before any child can participate.

Yes. Pediatric clinical trials go through extensive laboratory testing, regulatory review, and ethics board approval before reaching patients. Children are closely monitored throughout the study, and parents can withdraw their child at any time.

No. Most pediatric cancer clinical trials compare the current best treatment against a potentially improved version. Children in trials often receive care that is equal to or better than the existing standard of care, with additional monitoring and safety protections.

Your child’s oncologist is the best starting point. You can also search ClinicalTrials.gov, contact the National Cancer Institute (1-800-4-CANCER), or ask whether your child’s treatment center is affiliated with the Children’s Oncology Group (COG). Cure 4 The Kids Foundation is a proud member of COG.

No. Clinical trial participation is always voluntary. Your child will receive the best available standard-of-care treatment whether or not they participate in a study.

COG is the world’s largest childhood cancer research organization, supported by the National Cancer Institute. It coordinates clinical trials across more than 200 institutions nationwide, giving children at member centers access to the latest treatment protocols.

About the Author: Annette Logan-Parker brings over 30 years of experience in pediatric oncology to her role as Founder and Chief Advocacy & Innovation Officer at Cure 4 The Kids Foundation. She has dedicated her career to improving outcomes for children with cancer and ensuring equitable access to cutting-edge treatments for all families.

Gene Therapy for Hemophilia B: One Infusion, No More Weekly Treatments

Posted on by Jennifer Glover

Key Takeaways:

  • Gene therapy for hemophilia B targets the root cause of the condition — the faulty gene — rather than replacing the missing clotting factor from outside the body. A single intravenous infusion delivers a working copy of the factor IX gene to the liver, enabling the body to produce its own clotting factor.
  • Cure 4 The Kids Foundation completed Nevada’s first Hemgenix infusion in 2024 and is one of only a handful of centers on the West Coast to have administered this treatment. To date, C4K has successfully completed three Hemgenix infusions.
  • Gene therapy is not a cure. The underlying genetic condition remains, and a person with hemophilia B can still pass the gene to their children. Long-term monitoring is essential.
  • Hemgenix is currently approved for adults only (18 and older). Pediatric gene therapy trials are in development but not yet available for children.
  • New treatment options are expanding rapidly. Beyond gene therapy, the FDA approved fitusiran (Qfitlia) in 2025 — a subcutaneous injection given once every two months that works for both hemophilia A and B, approved for patients aged 12 and older.

Gene Therapy for Hemophilia B: A vial of blood for the Factor IX test

What Does Gene Therapy for Hemophilia Look Like in Practice?

Imagine living your entire life tethered to a treatment schedule. Every week — sometimes multiple times a week — you need an intravenous infusion of a clotting factor just to prevent a bleed that could send you to the hospital. You plan your work around it. Your vacations. Your daily routine. It has been this way since you were a child.

Now imagine a single infusion that could change all of that.

That’s not a hypothetical. It happened right here in Nevada. And it happened at C4K.

What is Gene Therapy for Hemophilia B?

Gene therapy for hemophilia B is a one-time intravenous treatment that delivers a working copy of the factor IX gene to the liver using a modified, harmless virus as a carrier. Once in place, the liver cells begin producing factor IX on their own — the clotting protein the body was never able to make before. Unlike traditional replacement therapy, which requires lifelong intravenous infusions, gene therapy addresses the genetic root cause of the bleeding disorder in a single treatment.

Why Was Nevada’s First Gene Therapy Infusion for Hemophilia a Milestone?

In 2024, Cure 4 The Kids Foundation completed Nevada’s first successful infusion of Hemgenix®, an FDA-approved gene therapy for adults with hemophilia B. C4K is one of only five centers on the West Coast that has administered this treatment — with just two additional centers currently trained to do so. Nationally, the number of sites approved to provide Hemgenix remains extremely limited, making access to this therapy a significant barrier for many patients across the country. To date, C4K has successfully completed three Hemgenix infusions.

The treatment was administered in our infusion suite under the supervision of Dr. Aimee Foord, director of Cure 4 The Kids Foundation’s Bleeding and Clotting Disorders Clinic, and Dr. Joseph Lasky, our medical director.

Our first patient was a 39-year-old man from Arizona who had lived with hemophilia B his entire life, requiring regular factor IX infusions to prevent dangerous bleeding episodes. After a single Hemgenix infusion, his body began producing its own factor IX.

More than a year later, he has maintained normal factor levels without a single additional infusion. Our subsequent patients have seen similarly promising results.

While this is a fantastic medical milestone, for this patient, it means so much more: It’s a fundamentally different life.

What Is Hemophilia, and Why Does It Require Lifelong Treatment?

To understand why gene therapy matters, it helps to understand what hemophilia is at its most basic level.

Hemophilia is a genetic bleeding disorder. People with hemophilia B are missing a working copy of the gene that tells the body how to make factor IX — a protein the blood needs to form clots. Without it, even a minor injury can lead to prolonged, sometimes dangerous bleeding. Internal bleeding, particularly around joints, can cause chronic pain and permanent damage over time.

For decades, the standard treatment has been replacement therapy: regular intravenous infusions of the missing clotting factor. It works, but it’s a lifelong commitment. Depending on severity, a patient may need infusions multiple times per week — every week — for the rest of their life.

How Does Hemgenix Gene Therapy Work?

Gene therapy takes a completely different approach. Instead of replacing the missing protein from outside the body, it addresses the root cause: the faulty gene itself.

Hemgenix works by delivering a functional copy of the factor IX gene directly to the patient’s liver cells using a modified, harmless virus as a carrier. Once the gene is in place, the liver cells begin producing factor IX on their own. The goal is for the body to take over — making the clotting factor it was never able to produce before.

It’s a single, one-time intravenous infusion. Not a daily medication. Not a weekly treatment. One infusion.

Is Gene Therapy a Cure for Hemophilia?

Gene therapy is a remarkable advancement, but it’s important to understand what it is and what it isn’t.

It is not a cure. Hemgenix does not fix or replace the original faulty gene. It adds a working copy. The underlying genetic condition remains, and a person with hemophilia B can still pass the gene to their children. Long-term monitoring is essential.

It is currently approved for adults only. Hemgenix is approved for adults aged 18 and older with hemophilia B who use factor IX prophylaxis or who have a history of serious bleeding episodes. Pediatric gene therapy trials are in development, but this treatment is not yet available for children.

Results can vary. Five-year follow-up data from the Phase 3 HOPE-B study, published in the New England Journal of Medicine, showed that Hemgenix reduced adjusted annualized bleeding rates by 63% through five years post-infusion, with mean factor IX activity levels sustained at 36.1%. In the trial, 94% of patients eliminated factor IX prophylaxis and remained free of continuous prophylaxis through four years. But individual responses differ, and ongoing research continues to track long-term outcomes.

It requires ongoing monitoring. After gene therapy, patients need regular follow-up to track factor levels, liver function, and overall response to treatment. At C4K, our team provides that long-term monitoring and support.

Where Is Gene Therapy for Bleeding Disorders Heading?

Hemgenix was the first gene therapy approved for hemophilia B (2022), and Roctavian became the first approved for hemophilia A in 2023. These approvals represented a new era in bleeding disorder treatment — one that targets the genetic root of these conditions rather than managing symptoms. (Note: BioMarin announced in early 2026 that it is withdrawing Roctavian from the market after commercial challenges. While this is a setback for hemophilia A gene therapy specifically, multiple next-generation gene therapies for hemophilia A are in active clinical development.)

The landscape is evolving rapidly. New therapies are also expanding options for patients. In March 2025, the FDA approved fitusiran (Qfitlia), a different kind of treatment that works by rebalancing the body’s clotting system rather than replacing the missing factor. It’s given as a subcutaneous injection once every two months and is approved for adults and pediatric patients aged 12 and older with hemophilia A or B — offering patients a less burdensome prophylactic option with as few as six injections per year.

Research is also underway to develop gene therapies for children, to improve the durability of factor expression over time, and to explore gene-based treatments for other bleeding disorders beyond hemophilia. The science is moving fast — and C4K is committed to staying at the leading edge of what’s available for our patients.

Infusion/Ambulatory Center

What Does a Life Without Weekly Infusions Look Like?

For someone who has never lived with a bleeding disorder, it’s hard to understand what weekly factor infusions mean in practice. It’s not just the time in a chair. It’s the planning. The anxiety. The constant awareness that without your next infusion, an ordinary injury could become an emergency.

For a child growing up with hemophilia, it shapes everything — what sports they play, whether they go on the school camping trip, how their parents navigate every bump and bruise with a calculation most families never have to make.

Gene therapy doesn’t erase the diagnosis. But for the patients it works for, it can remove the most burdensome part of living with it. And that changes a life.

How Can I Learn More About Gene Therapy for Hemophilia B?

If you or a family member is living with hemophilia B and you want to learn more about whether gene therapy may be an option, our Bleeding and Clotting Disorders Clinic is here to help. Dr. Aimee Foord and our hematology team can walk you through what’s available, what the process looks like, and what to expect.

To schedule a consultation, call us at (702) 732-1493.

At C4K, we believe every patient deserves access to the most advanced care available — right here in Nevada. No patient is ever turned away for financial reasons. That is our promise.

Frequently Asked Questions

No. Gene therapy for hemophilia B adds a working copy of the factor IX gene but does not fix or replace the original faulty gene. The underlying genetic condition remains, and a person with hemophilia B can still pass the gene to their children. However, for many patients, gene therapy significantly reduces or eliminates the need for routine factor IX infusions.

Hemgenix is currently FDA-approved for adults aged 18 and older with hemophilia B who use factor IX prophylaxis therapy or who have a history of current or life-threatening bleeding episodes. Eligibility also depends on testing for factor IX inhibitors and liver health. Your hematologist can help determine if you’re a candidate.

Five-year follow-up data from the HOPE-B clinical trial showed that factor IX activity levels remained sustained at a mean of 36.1%, and 94% of patients remained free of continuous prophylaxis through four years. Research is ongoing to track outcomes beyond five years.

Cure 4 The Kids Foundation in Las Vegas is the only center in Nevada to have administered Hemgenix gene therapy for hemophilia B. C4K is one of a limited number of centers on the West Coast offering this treatment. To learn more, contact the Bleeding and Clotting Disorders Clinic at (702) 732-1493.

Not yet. Hemgenix is currently approved only for adults aged 18 and older. Pediatric gene therapy trials are in development, and C4K is committed to offering the latest treatments as they become available.

In March 2025, the FDA approved fitusiran (Qfitlia), a subcutaneous injection given once every two months for patients aged 12 and older with hemophilia A or B. Unlike gene therapy or factor replacement, Qfitlia works by rebalancing the body’s clotting system. Your hematologist can help you understand which treatment options are right for you.

About the Author: Annette Logan-Parker brings over 30 years of experience in pediatric oncology to her role as Founder and Chief Advocacy & Innovation Officer at Cure 4 The Kids Foundation. She has dedicated her career to improving outcomes for children with cancer and ensuring equitable access to cutting-edge treatments for all families.

She Wasn’t Clumsy. She Wasn’t Dramatic. She Had a Bleeding Disorder No One Tested For.

Posted on by Jennifer Glover

Key Takeaways:

  • Bleeding disorders in girls are common but commonly missed. Von Willebrand disease is the most common bleeding disorder, affecting boys and girls equally — but girls are far less likely to be diagnosed.
  • Girls wait an average of 16 years for a diagnosis. Heavy periods, easy bruising, and prolonged nosebleeds are often dismissed as normal rather than recognized as symptoms of a bleeding disorder.
  • An estimated 2 million women in the U.S. may have an undiagnosed bleeding disorder. Many families don’t realize their bleeding is abnormal because other women in the family share the same undiagnosed condition.
  • Early diagnosis changes everything. It makes surgeries safer, periods treatable, and protects against life-threatening complications during pregnancy and childbirth.
  • You are not overreacting. If your daughter’s symptoms concern you, ask your pediatrician for a referral to a hematologist. At C4K, no child is ever turned away for financial reasons.

Why Bleeding Disorders in Girls Go Undiagnosed — and What Parents Can Do

She bruised easily. Everyone said she was clumsy.

Her nosebleeds wouldn’t stop. Everyone said she’d grow out of it.

Her periods left her doubled over and anemic. Everyone said that’s “just how it is for some girls.”

She wasn’t clumsy. She wasn’t dramatic. She had von Willebrand disease. And no one tested her for 16 years.

If this sounds familiar — if you’re reading this and thinking about your own daughter, your niece, or even yourself — you’re not alone. And you’re not imagining it.

What Are Bleeding Disorders, and Why Are Girls More Likely to Be Missed?

Bleeding disorders are conditions that affect the blood’s ability to clot properly. They include hemophilia, von Willebrand disease, rare factor deficiencies, platelet disorders, and more. Every March, during Bleeding Disorders Awareness Month, the bleeding disorders community comes together to raise awareness about these conditions. Since 2016, when the U.S. Department of Health and Human Services expanded what was previously Hemophilia Awareness Month, March has recognized the full spectrum of inheritable bleeding disorders. The red tie is the symbol of this community, representing the blood ties that bind us together.

At C4K, our Bleeding and Clotting Disorders Clinic, led by Dr. Aimee Foord, treats patients of all ages across this full spectrum. We see firsthand what these conditions look like in children — and we see how often they go unrecognized, especially in girls.

Dr. Aimee Foord, Pediatric Hematologist/Oncologist at Cure 4 The Kids Foundation

Most people hear “bleeding disorder” and think of hemophilia in boys. But the most common bleeding disorder isn’t hemophilia — it’s von Willebrand disease, and it affects boys and girls equally. The difference? Girls are far less likely to be diagnosed.

Here’s why that matters:

Why Are Bleeding Disorders in Girls Dismissed as Normal?

Because girls’ bleeding symptoms look different — and they’re easier to dismiss.

When a boy with hemophilia bleeds into a joint, it’s visible and alarming. When a teenage girl soaks through a pad every hour, misses school every month, and is chronically exhausted, she’s told: “That’s just how it is for some women.” Or: “You’ll regulate eventually.” Or: “Take some ibuprofen.”

Research confirms what many families already feel: women with inherited bleeding disorders often wait well over a decade — about 14 years on average — for a diagnosis, compared to under 10 years for men, even when bleeding begins at similar ages. The problem isn’t that girls aren’t showing symptoms. It’s that their symptoms are being normalized.

There’s another layer to this that we see in our clinic: many families don’t recognize heavy periods as abnormal because other women in the family have the same experience, unknowingly sharing the same undiagnosed condition. Mothers, daughters, aunts, sisters. Generation after generation told their bleeding is normal.

As Dr. Nidhi Bhatt at St. Jude Children’s Research Hospital has noted, adolescents often don’t feel comfortable talking about their bleeding — and that silence is one of the major reasons heavy menstrual bleeding goes undetected. St. Jude created the EAGER Clinic (Empowering Adolescents with Gynecology and Hematology Resources and Care) to address exactly this gap — bringing hematology, gynecology, and nursing together for adolescent patients. Their data reflects what we see nationally: only 1 in 3 women with heavy menstrual bleeding ever seek care for it.

What Are the Signs of a Bleeding Disorder in Girls?

Every child is different, and heavy bleeding doesn’t automatically mean a bleeding disorder. But these are signs worth discussing with your pediatrician or a hematologist:

  • Periods that last longer than 7 days
  • Soaking through a pad or tampon in an hour or less
  • Passing blood clots larger than a quarter
  • Missing school, sports, or social activities because of her period
  • Chronic fatigue or a diagnosis of iron-deficiency anemia
  • Easy bruising or frequent nosebleeds
  • Excessive bleeding after dental work, surgery, or an injury
  • A family history of heavy bleeding, frequent nosebleeds, or hysterectomies due to heavy periods

That last one matters more than many people realize. Von Willebrand disease is inherited. If the women in your family have always had “bad periods,” it’s possible there’s an undiagnosed bleeding disorder running through the family line.

What Happens When a Bleeding Disorder Goes Undiagnosed?

Delayed diagnosis isn’t just frustrating. It causes real harm.

Women who experienced multiple bleeding events before their diagnosis were nearly three times more likely to undergo a hysterectomy — a surgery that, in many cases, could have been avoided with earlier treatment.

Studies show that 74% of women with von Willebrand disease reported excessive bleeding from multiple sites. Twenty-five percent had undergone a hysterectomy, compared to just 9% in control groups. And rates of depression and anxiety in patients with VWD exceed 60%.

For teenage girls, the impact shows up in missed school days, withdrawal from activities they love, chronic exhaustion, and the quiet erosion of confidence that comes from being told — over and over — that nothing is wrong when they know something is.

Symptoms of Von Willebrand Disease

How Does Early Diagnosis Change a Girl’s Life?

When we identify a bleeding disorder early, everything shifts.

Surgeries become safer because the care team knows what they’re working with. Injuries are managed appropriately. Heavy periods can be treated — not dismissed. And the young woman at the center of it finally has answers instead of doubt.

Early diagnosis also protects her future. Women with bleeding disorders face increased risks during pregnancy and childbirth. Knowing about a bleeding disorder before that moment — not during a hemorrhage in the delivery room — can be lifesaving.

Where Can Families Get Help for Bleeding Disorders in Nevada?

At Cure 4 The Kids Foundation, our Bleeding and Clotting Disorders Clinic provides comprehensive evaluation and treatment for children and adults with bleeding disorders. Dr. Aimee Foord and our hematology team specialize in the conditions that are most often missed — especially in girls and young women.

If your daughter’s symptoms sound like what we’ve described here, we want you to know: you are not overreacting. You are not imagining it. And you don’t have to figure it out alone.

To schedule an appointment or request a referral, call us at (702) 732-1493.

No child is ever turned away for financial reasons. That is our promise.

March is Bleeding Disorders Awareness Month

This Month and Beyond

Bleeding Disorders Awareness Month is about more than wearing a red tie — though we hope you’ll do that too. It’s about expanding who we think of when we think of bleeding disorders.

It’s the teenage girl who can’t make it through a school day. It’s the mother who assumes her heavy periods are normal because her own mother had the same thing. It’s the young woman heading into surgery without anyone thinking to check her clotting factors first.

They deserve answers. They deserve care. And at C4K, they’ll find both.

If you think your daughter might have a bleeding disorder, don’t wait. Talk to your pediatrician. Ask for a referral. Or call us directly.

Because she’s not clumsy. She’s not dramatic. And she deserves to know what’s really going on.

Frequently Asked Questions

Yes. As many as 1 in 10 women with heavy menstrual bleeding may have an underlying bleeding disorder such as von Willebrand disease. Signs include periods lasting longer than 7 days, soaking through a pad or tampon in an hour or less, passing large blood clots, chronic fatigue, and iron-deficiency anemia. If your daughter is missing school or activities because of her period, it’s worth discussing with a pediatrician or hematologist.

Von Willebrand disease (VWD) is the most common inherited bleeding disorder, affecting up to 1% of the population. It occurs when the blood lacks sufficient von Willebrand factor, a protein that helps blood clot. VWD affects boys and girls equally, but girls are often diagnosed later — or not at all — because their symptoms, particularly heavy periods, are frequently dismissed as normal.

Diagnosis typically involves blood tests that measure von Willebrand factor levels and clotting function. These are specific tests that your pediatrician can order or a hematologist can perform. Standard blood work such as a CBC does not test for von Willebrand disease, which is one reason it’s so often missed. If your daughter has symptoms, ask specifically for von Willebrand disease testing.

Hemophilia is one type of bleeding disorder, but it’s not the only one — and it’s not the most common. Von Willebrand disease, rare factor deficiencies, and platelet disorders are all part of the bleeding disorders spectrum. Hemophilia is more commonly associated with boys, which has contributed to the misconception that bleeding disorders don’t affect girls. They do.

Cure 4 The Kids Foundation’s Bleeding and Clotting Disorders Clinic, led by Dr. Aimee Foord, provides comprehensive evaluation and treatment for children and adults with bleeding disorders in Southern Nevada. No child is ever turned away for financial reasons. Call (702) 732-1493 or visit cure4thekids.org to schedule an appointment or request a referral.

About the Author: Annette Logan-Parker brings over 30 years of experience in pediatric oncology to her role as Founder and Chief Advocacy & Innovation Officer at Cure 4 The Kids Foundation. She has dedicated her career to improving outcomes for children with cancer and ensuring equitable access to cutting-edge treatments for all families.

Why Families Trust Cure 4 The Kids Foundation for Pediatric Cancer Care

Posted on by Jennifer Glover

Key Takeaways:

  • Cure 4 The Kids Foundation is Nevada’s only dedicated pediatric cancer and rare disease treatment center, treating nearly 10,000 patients each year at its Las Vegas facility.
  • The organization has earned national recognition for more than two decades of innovation in pediatric oncology and rare disease care, including the 2026 Gamechanger Award presented by the U.S. Secretary of Health and Human Services and a Nevada State Senator.
  • Every child receives care regardless of ability to pay. Cure 4 The Kids Foundation’s Charity Care Program ensures no family is turned away for financial reasons.
  • Cure 4 The Kids Foundation employs 100% of Nevada’s board-certified pediatric oncologists, offering families access to the state’s deepest bench of childhood cancer specialists without leaving home.

When your child is diagnosed with cancer, one of the first and most urgent questions is: Where should we go for treatment? Families across Nevada and beyond turn to Cure 4 The Kids Foundation (C4K)—the state’s only dedicated pediatric cancer and rare disease treatment center—because of a track record built on clinical excellence, compassionate care, and nationally recognized innovation.

What Makes Cure 4 The Kids Foundation Different from Other Treatment Centers?

Most children’s hospitals have a pediatric oncology department. C4K was purpose-built—from the ground up—to focus exclusively on children with cancer and rare diseases. That single-minded focus shapes everything from staffing and research priorities to the way families experience care.

Founded in 2007 by Annette Logan-Parker, C4K began as a grassroots effort born from a deeply personal mission: ensuring that Nevada children facing life-threatening diagnoses could receive world-class treatment close to home. What started at a kitchen table has grown into a nationally recognized organization with more than 200 team members, Joint Commission accreditation, a CAP-accredited laboratory, and an expansive facility.

The result is a hybrid model that blends the clinical rigor of a major academic medical center with the heart of a nonprofit. C4K delivers research-focused, evidence-based care while maintaining a deeply human approach to supporting entire families—emotionally, practically, and financially.

Annette Logan-Parker holding the Gamechanger Award at the 2026 Starry Starry Night Gala recognizing Cure 4 The Kids Foundation for pediatric and rare disease innovation.

What National Recognition Has C4K Received?

C4K’s impact has been recognized at the highest levels of healthcare leadership. In January 2026, Founder Annette Logan-Parker received the Gamechanger Award at the Starry Starry Night Gala, held at Chaparral Country Club in Palm Desert, California. The award recognized more than two decades of leadership in pediatric and rare disease innovation and was presented by the U.S. Secretary of Health and Human Services and a Nevada State Senator representing part of Clark County (District 20), Jeff Stone.

This recognition builds on a history of honors that reflect C4K’s commitment to excellence, including being ranked #4 among the nation’s Best Nonprofits to Work For by NonProfit Times in 2021, recognition on the Inc. 5000 list of fastest-growing companies in America, and repeated Top Nevada Workplace designations.

These distinctions matter for families evaluating where to seek care. National recognition isn’t just a trophy on a shelf—it signals that an organization meets or exceeds the standards that define outstanding pediatric healthcare.

Why Does Specialized Pediatric Cancer Care Matter?

Children are not small adults. Their cancers behave differently, require different treatment protocols, and demand a care team that understands the unique needs of growing bodies and developing minds.

At C4K, families have access to Nevada’s board-certified pediatric oncologists—specialists whose entire careers are devoted to treating childhood cancer. This concentration of expertise means faster diagnoses, access to the latest clinical trials and research protocols, and treatment plans tailored specifically to pediatric patients.

Our clinical team includes pediatric oncologists and hematologists, behavioral health professionals, dedicated patient navigators, and more who help families manage everything from treatment schedules to insurance questions. It’s what we call “The C4K Way”—care that extends beyond medicine to support the whole family.

Will My Family Be Turned Away If We Can’t Afford Treatment?

No. One of the founding principles of Cure 4 The Kids Foundation is that no child with cancer will ever be denied treatment because of a family’s financial circumstances.

C4K’s Charity Care Program provides coverage for families who are uninsured, underinsured, or otherwise unable to pay for their child’s cancer or rare disease treatment. This commitment is central to our foundation’s mission and is reflected in our financial stewardship:

More than 90% of C4K’s expenses go directly to program services, meaning the vast majority of every dollar supports patient care.

For families navigating insurance questions, coverage gaps, or financial stress during a cancer diagnosis, C4K provides guidance and support from the very first appointment.

The Cure 4 The Kids Foundation Building at 1 Breakthrough Way in Las Vegas, Nevada

Where Is Cure 4 The Kids Foundation Located?

Cure 4 The Kids Foundation is located at 1 Breakthrough Way, Las Vegas, NV 89135, in the Summerlin area of Las Vegas. The facility is designed specifically for pediatric patients, with age-appropriate exam rooms, an onsite infusion center, and more.

C4K also serves families traveling from outside the Las Vegas area and out of state. As Nevada’s only dedicated pediatric cancer and rare disease treatment center, C4K regularly cares for patients whose families seek specialized expertise not available in their home community.

Frequently Asked Questions

Cure 4 The Kids Foundation is a nonprofit pediatric cancer and rare disease treatment center. It is an outpatient clinic, not a general hospital.

Yes. C4K accepts most major insurance plans. For families who are uninsured or underinsured, the Charity Care Program ensures that no child is turned away due to inability to pay.

Yes. C4K treats patients from across Nevada and beyond.

C4K treats the full spectrum of childhood cancers, as well as rare diseases and blood disorders. The clinical team includes specialists in pediatric oncology, hematology, rheumatology, and behavioral health.

Yes. C4K holds Joint Commission accreditation—the most rigorous quality and safety standard for medical facilities in the United States—and operates a CAP-accredited laboratory certified by the College of American Pathologists.

The Golden Hour: What Happens When Your Child Spikes a Fever During Cancer Treatment

Posted on by Jennifer Glover

Key Takeaways:

  • The Golden Hour is the critical 60-minute window to deliver antibiotics when a child with cancer spikes a fever.
  • Children with central lines (the tubes that deliver chemotherapy) are at high risk for serious infection because their immune systems are weakened.
  • Cure 4 The Kids Foundation reduced its average time to antibiotics from 85 minutes to 33 minutes, exceeding national benchmarks.
  • These results match or exceed outcomes from major academic children’s hospitals, achieved in an outpatient setting.
  • The improvement came from frontline staff examining every step of the process and finding ways to move faster—no expensive technology required.

When your child spikes a fever during cancer treatment, time slows down and speeds up all at once. You’re watching the clock. You’re watching your child. You’re watching the team move around you and wondering if everything is happening fast enough.

I’ve talked to enough parents to know that feeling. It stays with them.

I want to tell you what our team has been doing to honor that urgency.

What Is the Golden Hour in Pediatric Oncology?

The Golden Hour refers to the critical 60-minute window to deliver antibiotics to a child with cancer who develops a fever. Because chemotherapy weakens the immune system, children with central lines—the tubes that deliver treatment directly into their bloodstream—are at high risk for serious infection. Their immune systems can’t fight infection the way ours can, and that’s why getting antibiotics started within 60 minutes can be lifesaving.

What is Febrile Neutropenia?

You may hear your care team use the term “febrile neutropenia.” This simply means fever in a child whose immune system has been weakened by chemotherapy. “Febrile” means fever, and “neutropenia” means the body has very few neutrophils, which are the white blood cells that fight infection. So, because your child’s body can’t fight infection on its own, febrile neutropenia is treated as a medical emergency.

Where We Started

I believe in being honest with our families, and with ourselves. So here’s where we were a year ago: our average time was 85 minutes.

To put that in perspective, nationally, roughly half of pediatric emergency departments consistently meet the 60-minute goal. Major academic children’s hospitals—institutions with 24-hour pharmacies, dedicated emergency departments, and teams of residents—report median times between 55 and 75 minutes. Some published studies show baselines over 90 minutes prior to launching improvement initiatives.

We weren’t behind. By national standards, we were in the middle of the pack.

But “middle of the pack” isn’t good enough when it’s your child with a fever. Our team knew we could do better.

Why Outpatient Specialty Centers Can Move Faster

Here’s something important to understand: hospitals and outpatient centers are built for different things.

Hospitals are designed to handle everything—trauma, surgery, complex inpatients, emergencies of every kind. That breadth is their strength. But it also means a child with a fever may be one of dozens of urgent situations competing for attention at any given moment.

An outpatient specialty center like Cure 4 The Kids Foundation is different. We do one thing: care for children with cancer and rare diseases. When a child with a central line spikes a fever, they’re not waiting behind a car accident or a cardiac event. Our team knows them. Their chart is already open. The pharmacist who will compound their antibiotic is thirty feet away, not in a central pharmacy serving an entire hospital.

Neither model is better. They serve different purposes. But for this specific situation—a known patient, a predictable emergency, a race against the clock—the focused outpatient model has real advantages. And our team has learned to use every one of them.

Kids receiving infusions at Cure 4 The Kids Foundation

How Our Team Cut Time to Antibiotics in Half

This is the part that makes me proud.

A group of nurses, providers, pharmacists, and lab staff came together—not because anyone made them, but because they saw a problem and wanted to fix it. They walked through every step of the process. They asked hard questions. They challenged the way things had always been done.

They found minutes hiding everywhere. In the compounding suite. In the order sets. In the handoffs between teams. In the small hesitations that happen when people aren’t sure if they should ask for help.

And then they fixed them. One by one.

There was no magic solution. No expensive new technology. Just people who cared enough to look honestly at their work and commit to doing it better.

Where We Are Now: Cure 4 The Kids Foundation’s Golden Hour Results

Throughout 2025, we tracked every antibiotic administered to a patient with a central line.

Cure 4 The Kids Foundation’s Time to Antibiotics (2025)

Starting Baseline
85 minutes
2025 Average
57 minutes
December 2025
33 minutes
National Benchmark
60 minutes
National Pediatric ED Range
55–90+ minutes

We now consistently meet the Golden Hour benchmark. Some months, we’re well under it.

For context: These results put us on par with the best published outcomes from major academic children’s hospitals around the country—and we’re doing it as an outpatient clinic, without a 24-hour pharmacy, without a dedicated emergency department, without the infrastructure those institutions have.

Why I’m Sharing This

I’m not sharing this to brag. I’m sharing it because families deserve to know.

When I started Cure 4 The Kids Foundation in 2007, it was because I believed Nevada families shouldn’t have to leave home to get excellent care for their children. I’d seen too many families torn apart by distance—siblings separated, parents missing work, support systems left behind—because the assumption was that “real” pediatric cancer care happened somewhere else.

I wanted to build something that proved that wrong. This—what our team did in 2025—is that proof. Not because I told them to. Because it’s who they are.

To Our Families

If your child is being treated at C4K, here’s what I want you to know:

When your child spikes a fever, we feel the urgency too. We’re not just going through the motions. We’ve built systems to move fast, and we hold ourselves accountable to using them. We track our own performance—not because someone makes us, but because your child deserves that kind of attention.

You trusted us with the most precious thing in your life. This team takes that seriously. Every day. Every patient. Every minute.

Click Here to Explore Patient and Caretaker Resources

To the Cure 4 The Kids Foundation Team

I’ve watched this organization grow from a kitchen table idea to what it is today. I’ve seen a lot of things I’m proud of.

This is near the top.

Not because of the numbers—though they’re remarkable. Because of what the numbers represent: a team that looked at itself honestly, identified where it could do better, and then actually did it. Without excuses. Without waiting to be told.

That’s the C4K Way. And you lived it.

When I started C4K, people told me Nevada couldn’t support this kind of care. That families would always have to leave.

This team just proved them wrong, 33 minutes at a time.

This is why I built C4K. This right here is the whole point.

About the Author: Annette Logan-Parker brings over 30 years of experience in pediatric oncology to her role as Founder and Chief Advocacy & Innovation Officer at Cure 4 The Kids Foundation. She has dedicated her career to improving outcomes for children with cancer and ensuring equitable access to cutting-edge treatments for all families.

How the AKAC and GKAC Acts Could Transform Pediatric Care

Posted on by Jennifer Glover

Key Takeaways:

  • What are the AKAC and GKAC Acts? Two bipartisan federal bills working to remove systemic barriers in pediatric cancer and rare disease care by streamlining Medicaid enrollment for out-of-state specialists (AKAC) and accelerating pediatric drug development (GKAC).
  • Why do the AKAC and GKAC Acts matter for children with cancer and rare diseases? The AKAC Act eliminates administrative delays that prevent families from accessing specialized care across state lines, while the GKAC Act ensures children gain earlier access to innovative cancer therapies already being studied in adults.
  • How would the AKAC Act improve access to pediatric specialists? By creating a simplified enrollment pathway for qualified out-of-state providers already in good standing with Medicare or another state’s Medicaid program, reducing weeks of bureaucratic delays that can compromise treatment outcomes.
  • What changes would the GKAC Act bring to pediatric cancer research? It expands FDA authority to require earlier pediatric studies of promising combination therapies and extends the Rare Pediatric Disease Priority Review Voucher Program through 2029, incentivizing pharmaceutical companies to invest in treatments for children.
  • How do access and innovation work together in pediatric care? Improving provider access through AKAC means nothing without better treatments available through GKAC, while innovative therapies developed through GKAC research only help children who can actually reach qualified specialists supported by AKAC reforms.

When a family learns their child has cancer or a rare disease requiring specialized treatment unavailable locally, they face an immediate crisis. Within days, they must coordinate care with distant specialists, navigate insurance approvals, and often travel across state lines while their child’s condition progresses. At Cure 4 The Kids Foundation, we know that barriers to care aren’t always medical. Sometimes, they’re bureaucratic. And in pediatric oncology and rare disease treatment, bureaucratic delays can have devastating consequences.

The Hidden Barriers to Kids’ Healthcare Most Families Face

Two systemic issues create unnecessary obstacles for families seeking specialized pediatric care. Administrative barriers force families to wait weeks for out-of-state Medicaid provider enrollment while their child’s treatment window closes. Research lag excludes children from early-stage drug studies, meaning therapies that could save lives remain unavailable to pediatric patients for years after demonstrating promise in adults.

These issues translate directly into delayed care and fewer treatment options for kids. When a child needs a bone marrow transplant specialist in another state, Medicaid enrollment requirements can add weeks to an already compressed timeline. When a promising combination therapy shows remarkable results in adult cancer patients, children with the same disease type often wait years before that treatment becomes available in pediatric formulations or dosing protocols. 

In pediatric cancer, the difference between timely care and delayed care is measured in weeks—and weeks are a luxury children do not have.

What Is the Accelerating Kids’ Access to Care Act (AKAC)?

The Accelerating Kids’ Access to Care Act addresses the administrative maze families encounter when seeking out-of-state specialized care. This bipartisan legislation creates an opt-in enrollment pathway for qualified providers already in good standing with Medicare or another state’s Medicaid program, allowing them to participate in multiple state programs without duplicating the entire credentialing process.

The AKAC Act specifically targets children with complex or rare conditions who often need to cross state lines to reach specialists with the expertise their cases require. Families in Nevada frequently travel to California, Arizona, Utah, or even farther for advanced procedures like bone marrow transplant, rare disease treatment protocols, or clinical trials. In these cases, the medical urgency is clear, but the administrative pathway is slow. Under current systems, even when a family identifies the right specialist and secures a referral, Medicaid enrollment requirements in the provider’s state can delay treatment for weeks.

How Does AKAC Remove Red Tape?

What makes AKAC particularly effective is that it reduces administrative duplication while keeping state authority over authorizations and payment rates intact. States maintain control over which providers can participate and how services are reimbursed. The legislation simply removes the redundant paperwork that forces qualified providers to complete separate, lengthy enrollment processes for each state’s Medicaid program.

We’ve seen firsthand how weeks of waiting for a provider to be enrolled can mean the difference between timely treatment and avoidable complications. In pediatric cancer and rare disease care, treatment timing directly affects outcomes. A delay measured in weeks can allow disease progression that makes subsequent treatment less effective or even impossible. The AKAC Act recognizes that children with serious illnesses cannot afford to wait while administrators process paperwork for providers who are already qualified and practicing successfully in neighboring states.

How the Give Kids a Chance Act (GKAC) Brings Innovation to Children Faster

The Give Kids a Chance Act tackles a different but equally critical barrier. Children with cancer shouldn’t have to wait years for access to innovative therapies that are already improving survival rates in adults. Current drug development pathways often study combination therapies in adult populations first, then conduct separate pediatric trials years later if companies choose to pursue pediatric indications. This sequential approach means children miss out on potentially life-saving innovations during their most critical treatment windows.

The GKAC Act expands FDA authority to mandate pediatric studies when adult data already shows promise, particularly for combination therapies. Many of the most effective cancer treatments today involve combining multiple drugs to target disease through different mechanisms. When these combinations demonstrate significant benefits in adult trials, the GKAC Act ensures that pharmaceutical companies must also study appropriate pediatric applications rather than treating pediatric development as optional.

How Does GKAC Incentivize Pharmaceutical Companies?

GKAC not only accelerates pediatric studies, it also strengthens the Rare Pediatric Disease Priority Review Voucher Program through 2029. This program incentivizes companies to invest in therapies for children with rare diseases by providing vouchers that can expedite FDA review of other drugs in their pipeline. By extending and strengthening this program, the GKAC Act makes pediatric rare disease drug development more financially viable for pharmaceutical companies, addressing the market dynamics that historically under-invest in pediatric populations.

This bill aligns perfectly with our mission to bring the most advanced, research-based treatments to Nevada families. At Cure 4 The Kids Foundation, we’ve built our clinical programs around the principle that children deserve access to cutting-edge therapies informed by the latest research. The GKAC Act helps bridge the gap between adult cancer research breakthroughs and their availability to pediatric patients, ensuring that promising innovations reach children during their treatment journey rather than years after they first needed them.

Why Federal Progress Matters for Nevada Families

The AKAC and GKAC Acts complement each other in ways that directly address challenges Nevada families face. One removes red tape that delays treatment. The other accelerates research so that better treatments reach children sooner. Together, they create a system where families can access the right specialists without bureaucratic delays and those specialists have innovative, evidence-based treatment options available.

This federal progress connects directly to our local advocacy work at Cure 4 The Kids Foundation. As we work to establish Nevada’s first in-state Pediatric Stem Cell and Bone Marrow Transplant Program, we’re addressing the same fundamental issue the AKAC Act targets—eliminating unnecessary barriers between children and specialized care. When Nevada children no longer need to travel out of state for bone marrow transplants, their families avoid the Medicaid enrollment challenges AKAC addresses. But until that program launches, AKAC will make out-of-state referrals significantly faster and less burdensome.

Similarly, as we advance outpatient treatment models and expand our clinical trial portfolio, the GKAC Act ensures that the innovative therapies we bring to Nevada reflect the latest research developments. Federal and state action work together to make comprehensive, equitable care possible. National legislation creates frameworks that support local program development, while local programs like ours demonstrate the real-world impact of improved access and innovation.

Understanding How Access and Innovation Connect

It’s tempting to view access and innovation as separate policy goals, but in pediatric specialty care, they’re inseparable. The most innovative cancer therapy provides no benefit to a child who cannot reach a qualified oncologist trained to administer it. Conversely, excellent access to specialists means little if those specialists lack effective treatment options.

The AKAC and GKAC Acts recognize this interconnection. By addressing both administrative access barriers and research development timelines, these bills create conditions where children can benefit from medical advances in real time rather than years after those advances occur. 

When you’re navigating treatment for a child with a serious illness, you don’t distinguish between “access problems” and “innovation problems.” You simply want your child to see the right doctor and receive the best available treatment as soon as possible. The AKAC and GKAC Acts work together to make that straightforward goal much more achievable.

What Families and Supporters Can Do

While these bills work their way through Congress, families and advocates can take several steps to support their passage and prepare for the improvements they’ll bring. Learning more about both pieces of legislation helps build public understanding of why these specific policy changes matter. Organizations like the Coalition Against Childhood Cancer (CAC2), Children’s Cancer Cause, and the EveryLife Foundation provide resources and advocacy opportunities for those interested in supporting these federal efforts.

Sharing this message with your networks—whether through social media, conversations with local elected officials, or discussions within patient advocacy groups—helps build momentum for bipartisan healthcare improvements that directly benefit children. These bills have attracted support from both sides of the aisle because they address clear, documented problems with practical solutions.

At Cure 4 The Kids Foundation, we’ll continue working alongside Nevada families and national partners to make sure no child waits for the care or innovation they deserve. Our advocacy extends from our clinic in Las Vegas to state legislative efforts and national policy conversations, because improving outcomes for children with cancer and rare diseases requires action at every level.

Kids Can’t Wait

The timeline of childhood cancer and rare disease doesn’t align with administrative convenience or traditional drug development schedules. 

The Accelerating Kids’ Access to Care Act and the Give Kids a Chance Act recognize this fundamental truth. Kids can’t wait—not for enrollment forms, not for research pipelines, not for tomorrow’s treatments. These bills represent meaningful steps toward a healthcare system that matches the urgency of pediatric illness with the speed of access and innovation children deserve.

As these pieces of legislation move forward, they carry the hopes of every family who has faced bureaucratic delays while seeking specialized care and every family who has watched their child’s treatment options limited by slow pediatric drug development. By breaking down barriers to both access and innovation, the AKAC and GKAC Acts move us closer to a system where every child can reach the right specialist and receive the most advanced care available, regardless of where they live or which state lines they need to cross for treatment.

About the Author: Annette Logan-Parker brings over 30 years of experience in pediatric oncology to her role as Founder and Chief Advocacy & Innovation Officer at Cure 4 The Kids Foundation. She has dedicated her career to improving outcomes for children with cancer and ensuring equitable access to cutting-edge treatments for all families.

When Research Funding Shrinks, Nevada’s Most Vulnerable Patients Pay the Price

Posted on by Jennifer Glover

Key Takeaways:

  • Nevada receives among the lowest NIH funding in the nation—ahead of only Alaska and Wyoming—making our research ecosystem especially vulnerable to federal cuts.
  • Philanthropy cannot replace federal investment. Private foundations account for just 1.2% of medical research spending in the U.S., while the federal government accounts for 25%. Even extraordinary philanthropic efforts cannot backfill meaningful federal reductions.
  • The consequences cascade quickly: Young researchers leave the state, clinical trials close, patients lose access to cutting-edge treatments, and families return to the old Nevada reality of “pain, get on a plane.”
  • Nevada has made enormous progress—achieving R1 research status at both major universities, establishing the Nevada Rare Disease Advisory Council, and building partnerships that bring clinical trials home. But this ecosystem remains fragile.
  • Research funding determines whether Nevada continues advancing care or falls backward. For children with cancer, rare disease patients, and Nevada’s rapidly growing senior population, these aren’t budget numbers—they’re timelines for hope.

Clinical Studies
Research saves lives—plain and simple.
 
Every breakthrough that transformed modern medicine was sparked by research fueled largely by federal investment through the National Institutes of Health (NIH). From immunotherapy for cancer to the diagnostics that extend life for children with rare diseases, none of it would exist without the decades-long commitment of public research dollars.
But today, that lifeline is under threat.
 
Recent federal proposals to cut NIH funding—and delays in distributing existing grant dollars—are creating real fear among researchers, clinicians, and families across the country. Here in Nevada, where research infrastructure is still young and fragile, the impact could be far more severe.
 
And let me be clear: Nevada cannot afford to lose ground. Our patients cannot afford for progress to slow—even by a single year.

Nevada Depends on Research More Than Most States

Nevada receives among the lowest NIH funding in the nation—ahead of only Alaska and Wyoming. That’s not because our needs are lower; it’s because our research ecosystem is still developing.
 
We’ve made enormous strides:
 
  • UNR and UNLV both achieved the prestigious R1 “Very High Research Activity” classification.
  • State investments in research infrastructure have grown.
  • Nonprofits—including Cure 4 The Kids Foundation and the Lou Ruvo Center—have brought clinical trials and emerging science home to Nevada families.

But this ecosystem is still delicate, and when federal funding becomes uncertain, the consequences cascade quickly:

  • Young researchers leave the state or the field entirely.
  • Labs lose momentum because science can’t be turned on and off.
  • Patients lose access to cutting-edge treatments and clinical trials close to home.
  • Families are forced back into the old Nevada reality: “pain, get on a plane.”
For rare disease and pediatric cancer patients—who already face delayed diagnoses, limited specialists, and complex treatment pathways—these setbacks can cost not just years, but lives.

Philanthropy Can Spark Progress—But It Cannot Replace Federal Investment

Nevada is incredibly generous. From the Keep Memory Alive Rodeo to 5K fundraisers and galas statewide, philanthropy is part of the fabric of our community.
 
These efforts matter. They help researchers test ideas, build proof-of-concepts, and create momentum that leads to larger federal grants.
 
But philanthropy represents just 1.2% of medical research spending in the U.S. Industry accounts for 66%. The federal government accounts for another 25%.
 
This means even the most extraordinary philanthropic efforts simply cannot backfill a meaningful federal reduction. As one national expert said: “There’s no way foundations can fill the gap.”

Federal Cuts Have Real Human Consequences

Nevada researchers are already feeling the fallout of uncertainty. One UNR research associate had to leave her NIH-funded lab position when delays in grant disbursement caused the funding to lapse. She moved to a different field—one less connected to patient care and scientific advancement.
 
This is not an isolated story. Delays pull graduate students, early-career researchers, and skilled lab staff away from critical work. Some never return. Every time this happens, we lose knowledge, momentum, and years of potential discovery.
 

This brain drain is devasting for Nevada, a state battling:

  • Some of the fastest-growing Alzheimer’s rates
  • The nation’s lowest childhood cancer research participation
  • A severe shortage of pediatric specialists, and
  • One of the most underserved rare disease populations

Why It Matters for Children With Cancer and Rare Diseases

At Cure 4 The Kids Foundation, we see firsthand the power of research. NIH-supported studies have created therapies that now cure over 80 percent of childhood cancers and have begun opening pathways for rare genetic diagnoses that once had no hope.
 
Our partnership in national research networks—COG, NANT, and disease-specific collaborations—brings the most advanced science directly to Nevada families. The state’s Rare Disease Advisory Council (NVRDAC) is using data from our Nevada Rare Disease Needs Assessment and the Nevada Cancer & Rare Disease Registry to shape smarter policy built on real patient experiences.
 

None of this happens if research stalls.

  • Families lose access to clinical trials.
  • Promising treatments slow down.
  • Early-phase discoveries never reach the bedside.

Nevada’s Strength Is Its Willingness to Build—Now We Must Protect What We’ve Built

Nevada has never been afraid to take bold steps:

  • We built a statewide pediatric oncology program from scratch.
  • We created a Rare Disease Advisory Council when most states had none.
  • We expanded newborn screening and modernized genetic care.
  • We established the Nevada Cancer & Rare Disease Registry—the first of its kind in the state.
  • We invested in research universities, upgraded infrastructure, and positioned Nevada to compete nationally.
But these achievements sit on a knife’s edge. NIH cuts aren’t just numbers in a budget line—they determine whether our state continues advancing care or falls backward.

Infusion/Ambulatory Center

A Call to Protect Research—and the Patients Behind It

Nevada’s future in scientific discovery depends on the stability, strength, and predictability of federal research funding.
 
As leaders in healthcare, government, and philanthropy, we must:
 
1. Advocate fiercely for protecting NIH funding. Research is a public good. It belongs to every family.
 
2. Maintain and expand Nevada’s state investments. State support has helped us climb into national competitiveness—we cannot retreat.
 
3. Strengthen public-private partnerships. Philanthropy should spark innovation, not rescue it.
 
4. Build sustainable research career pathways in Nevada. To retain scientists, we must create stable funding environments.
 
5. Ensure that rare disease and pediatric cancer patients remain at the center.
 
Their needs are urgent. Their timelines are short. Their voices must shape our priorities.
 

Hope Is Still on Our Side

Nevada has a long history of proving people wrong. We innovate quickly, we collaborate deeply, and we build infrastructure at a pace most states envy.
 
And our researchers—at C4K, Lou Ruvo, UNLV, UNR, and across the state—are rising to the challenge with creativity, resilience, and a fierce commitment to the communities they serve.
 
But they cannot do it alone.
 
We need stable, sustained research funding so that the next breakthrough happens here—and so Nevada families don’t have to leave their state or their support systems when facing the hardest moments of their lives.
 
Our children, our seniors, and our rare disease community are counting on us to stand up for science.
 
And we must.
 
Because in Nevada, research isn’t optional. It’s life-saving.

About the Author: Annette Logan-Parker brings over 30 years of experience in pediatric oncology to her role as Founder and Chief Advocacy & Innovation Officer at Cure 4 The Kids Foundation. She has dedicated her career to improving outcomes for children with cancer and ensuring equitable access to cutting-edge treatments for all families.

Reflections from Golf 4 The Kids 2025

Posted on by Jennifer Glover

Key Takeaways:

  • Participants ranged from patient families to caregivers to community organizations, embodying the spirit of Southern Nevada’s support for childhood cancer care
  • For the first time, Cure 4 The Kids is sharing founder Annette Logan-Parker’s signature Bloody Mary recipe, a tournament tradition since day one
  • The 2025 tournament brought together existing supporters and new partners in challenging philanthropic times, proving community strength
  • Volunteers and staff created personal connections with every golfer, reflecting C4K’s culture of care beyond the clinic
  • The tournament demonstrated Southern Nevada’s unwavering support for children battling cancer and rare diseases

Golfing to make an impact at Golf 4 the Kids 2025

Reflections from Golf 4 The Kids 2025

The sun was barely peeking over the fairways at Red Rock Country Club when I arrived at 6:00 AM on October 27th, arms loaded with Bloody Mary mix, vodka, and a handwritten note from Annette that simply read: “Keep the pour light, the mix cold, and the love heavy-handed.”

For the first time in the history of Golf 4 The Kids, I was taking over the signature Bloody Mary tent!

A Made-With-Love Morning Cocktail

If you’ve attended our Halloween Golf Tournament before, you know that Annette’s Bloody Mary tent isn’t just a refreshment stop—it’s where the day truly begins. Positioned right where golfers collect their carts, it’s become the heart of the tournament, a place where our founder personally greets every participant, thanks them for being there, and sends them off with something made with care.

The tradition started with the very first Golf 4 The Kids tournament. Back then, Annette was cooking breakfast burritos at staff meetings, arriving early to prepare meals in the clinic kitchen when our team was half its current size. Her hands-on approach to hospitality has always defined who we are as an organization. The Bloody Mary tent is an extension of that same spirit—a reminder that at Cure 4 The Kids Foundation, we put our whole hearts into everything we do.

A Day of Sunshine, Laughter, and Purpose

By the time our golfers started arriving, the course was alive with possibility. We had 21 incredible sponsors supporting the day, including 1Care Kids in their second year as presenting sponsor—a partnership we’re deeply grateful for. Nine new sponsors joined the C4K family this year, from caregivers and patient families to community organizations and heroes like the Clark County Firefighters: Local 1908. Several have already committed to making this an annual tradition.

The tournament itself was everything we’d hoped for: beautiful fall weather, activities at 16 of the 18 holes—everything from pirate-themed rum tastings to whiskey samplings and games—and volunteers who brought so much heart to the course. Many of our volunteers were C4K staff members who traded their clinic shifts for the day, and the feedback from golfers was overwhelming. They were genuinely moved by the passion and knowledge our team brought to every interaction.

The costume contest brought Halloween flair to the fairways, with our grand prize winner earning his title by golfing the entire tournament dressed as a piñata. Two lucky golfers earned shots at the $1 million and $100,000 prizes, and while neither made the 135-yard hole-in-one, everyone had fun and excitement was flying high!

But what made this year special wasn’t captured in any single moment. It was the laughter over Bloody Marys at sunrise. The parents of patients who participated, transforming their personal journeys into advocacy. The engaged conversations between Christine, our CEO, and community members who wanted to understand our mission more deeply. The way complete strangers became part of the C4K family on the golf course.

Our costume contest winner at Golf 4 the Kids 2025!

Annette’s Bloody Mary Recipe Revealed

For years, golfers have asked Annette for her Bloody Mary recipe. And for years, she’s smiled and kept it close. But traditions grow stronger when they’re shared, when they can be recreated in homes and gatherings beyond the golf course.

This year, with Annette off-site for the first time, she shared her closely-guarded recipe and trusted me to carry on the tradition. Even better, now she’s making the recipe public for the first time!

Download the recipe card and bring a little extra love from Cure 4 The Kids Foundation into your kitchen. Whether you’re hosting friends or planning your own fundraising event, this recipe carries the spirit of everything we do at C4K—made from scratch, made with care, and made for connection.

Note from Annette: This is a small-batch version of our event favorite! Rich, garden-fresh, and made with love.

CLICK HERE TO DOWNLOAD THE FULL RECIPE CARD!

Passing the Torch

Taking over the Bloody Mary tent this year meant more to me than mastering measurements and garnish placement. It represented something central to C4K’s culture: the deliberate passing of traditions, the mentoring of new leaders, and the assurance of continuity in everything we do.

That same principle guides us in the clinic every day. When Christine Tonn stepped into the CEO role, bringing her extensive background in nonprofit healthcare finance and her commitment to continuous improvement, she ensured that C4K’s mission would continue to thrive. Strong leadership is at its best when it preserves the heart of an organization while building capacity for the future.

At Cure 4 The Kids Foundation, we always invest in the next generation. We document. We train. We pass along not just the “what” but the “why” because traditions matter. Culture matters. And the kids we serve deserve an organization full of heart that’s built to last.

Here’s to Next Year!

As the event wrapped up, I thought about all the golfers who’d stopped by that morning. Some were longtime supporters who hugged me and said, “Annette would be proud.” Others were first-time participants who told me they’d be back next year, and the year after that.

The funds raised at Golf 4 The Kids are vital to advancing cures and treatment for kids with cancer and rare diseases, and on behalf of Cure 4 The Kids Foundation, I want to extend my thanks and gratitude. It’s so beautiful to see the community that forms when people gather around a shared purpose.

Thank you to every golfer, sponsor, and volunteer who made this year’s tournament unforgettable. Thank you to the Cure 4 The Kids team for getting the word out and securing so many wonderful sponsors. Thank you for showing up and for caring deeply about Nevada’s children who are fighting the toughest battles of their lives.

And thank you, Annette, for trusting me (and all of us!) with your recipe!

Here’s to good friends, great golf, and lasting traditions! Cheers to another amazing year, and to many more to come.

Amber Williams, Director of Communications at Cure 4 The Kids Foundation

About the Author: Amber Williams serves as Director of Communications at Cure 4 The Kids Foundation, where she has spent over 8 years building connections between the organization and the Southern Nevada community. She is passionate about ensuring every family knows they have a place to turn when their child needs specialized care.

Nevada Rare Disease Support: Share Your Experience to Shape the Future of Care

Posted on by Jennifer Glover

Key Takeaways:

  • Nevada’s Rare Disease Advisory Council (NV-RDAC) has launched comprehensive Patient & Family and Healthcare Provider Needs Assessments to gather critical insights about rare disease care in Nevada
  • An estimated 25–30 million Americans live with rare diseases, yet many families spend years searching for diagnosis and appropriate care without feeling heard by the healthcare system
  • The findings from both assessments will directly shape Nevada’s next Rare Disease State Plan, guiding policies and programs that reflect real patient and provider experiences
  • Nevada is one of 33 states with a Rare Disease Advisory Council, part of a national movement to give rare disease communities a stronger voice in state government
  • Every response to these assessments helps identify gaps in care coordination, access, and support systems for Nevada’s rare disease community

What Is the Nevada Rare Disease Advisory Council Doing to Support Nevada Families?

The Nevada Rare Disease Advisory Council (NV-RDAC) was formed under SB315 during the 2019 legislative session of the Nevada legislature. As an advising body, NV-RDAC provides a platform for those living in Nevada who are affected by a rare disease, giving this community a stronger voice in healthcare and state government.

Nevada is one of 33 states across the United States that has established a Rare Disease Advisory Council. The first RDAC was created in North Carolina in 2015 by advocates and families driven to make a difference. This national movement recognizes that state governments are uniquely positioned to address rare disease needs in ways that align with their population’s demographics and healthcare landscape.

NV-RDAC’s duties include:

  • Performing statistical and qualitative examination of rare diseases in Nevada
  • Increasing awareness of the burden caused by rare diseases
  • Identifying evidence-based strategies to prevent and control rare diseases
  • Evaluating systems for delivery of treatment

The council also works to increase awareness among healthcare providers of the symptoms of and care for patients with rare diseases, develops a registry of rare diseases diagnosed in Nevada, and compiles an annual report with recommendations for legislation and policy.

Through proactive engagement, the council has fostered discussions with key stakeholders, including organizations such as the National Organization for Rare Disorders (NORD), Medical Home Portal, Cure 4 The Kids Foundation, and Global Genes. A key outcome of these efforts has been the council’s close collaboration with the Nevada Department of Health and Human Services (DHHS) to streamline data collection processes.

How Common Are Rare Diseases in Nevada?

While individual rare diseases affect fewer than 200,000 people in the United States, there are over 10,000 known rare diseases. Collectively, they impact an estimated 25–30 million Americans, with approximately 50% of those affected being children. These conditions lead to significant challenges in diagnosis, treatment, and quality of life for affected individuals and their families.

In Nevada, specific statistics for the prevalence of rare diseases have not been readily available. Data collection and reporting on rare diseases can be challenging due to their rarity and the fragmented nature of healthcare systems. This gap in understanding makes it difficult for state policymakers and government officials to have an in-depth understanding of the needs of Nevada’s rare disease community.

That lack of awareness contributes to common and harmful obstacles that rare disease patients face, including delays in diagnosis, misdiagnosis, lack of treatment options, high out-of-pocket costs, and limited access to medical specialists. Many rare diseases go undiagnosed or misdiagnosed for years due to lack of awareness among healthcare providers and the rarity of these conditions.

But behind every rare disease statistic is a story—a parent searching for answers, a provider trying to help, and a system learning how to listen.

What Does It Mean When Healthcare Systems Stop Listening?

Innovation moves quickly in healthcare. New treatments emerge, advanced diagnostics become available, and digital platforms transform how we access care. But amid all that progress, one truth remains: none of it matters if people don’t feel heard.

Listening forms the foundation of trust, safety, and healing. Yet silence continues to be one of the most persistent barriers in our healthcare system. This silence happens when a patient doesn’t feel safe to speak up, when a parent is dismissed for asking questions, or when a provider notices something concerning but stays quiet because their feedback has been overlooked before.

In the world of rare disease, that silence is magnified. Families can spend years searching for answers, only to feel unheard when they finally find care. Healthcare providers, meanwhile, often work within systems that aren’t equipped to support the complexity or isolation that rare conditions bring. When patients and providers go unheard, care fragments and trust erodes.

Dr. Aimee Foord, Director of Benign Hematology at Cure 4 The Kids Foundation

How Has NV-RDAC Made Listening the Starting Point for Change?

18 months ago, NV-RDAC launched Nevada’s first-ever Patient & Family Needs Assessment, and the response has been powerful. The data gathered so far has already begun shaping how the council understands access, care coordination, and quality-of-life challenges for those living with rare diseases in Nevada. But more voices are needed to complete the picture. Every new response adds critical insight that helps drive meaningful change.

Now, NV-RDAC is expanding that work with the launch of its Healthcare Provider Needs Assessment, designed to capture the perspectives of those on the frontlines of rare disease care. Together, these two assessments bring every voice to the table.

The NV-RDAC surveys ask simple but powerful questions, like: 

  • What are families struggling with? 
  • Where do providers feel unsupported? 
  • How can Nevada build a system where listening is as essential as lab results and diagnosis codes?

The findings from both assessments will directly shape Nevada’s next Rare Disease State Plan, guiding policies, programs, and priorities that reflect what people actually experience, not just what data alone can tell us.

How Can You Add Your Voice to Shape Nevada Rare Disease Support?

We know that change doesn’t start with policies. It starts with people speaking and others choosing to listen.

If you are a patient, family member, or caregiver living with a rare condition in Nevada, your story matters. The Patient & Family Needs Assessment gives you the opportunity to share your experiences navigating diagnosis, treatment, and ongoing care.

TAKE THE PATIENT & FAMILY NEEDS ASSESSMENT

If you are a healthcare provider treating patients with rare or complex conditions, your perspective is equally vital. The Healthcare Provider Needs Assessment allows you to share insights about the challenges you face in providing care, gaps in resources or training, and what support would help you better serve your patients.

TAKE THE HEALTHCARE PROVIDER NEEDS ASSESSMENT

Your input helps the council identify where silence still exists and how to replace it with collaboration, compassion, and action.

How Has Patient Input Driven Nevada Rare Disease Legislation?

We know that change doesn’t start with policies. It starts with people speaking and others choosing to listen.

If you are a patient, family member, or caregiver living with a rare condition in Nevada, your story matters. The Patient & Family Needs Assessment gives you the opportunity to share your experiences navigating diagnosis, treatment, and ongoing care.

“Change doesn't start with policies. It starts with people speaking and others choosing to listen.”

Annette Logan-Parker, Board Chair at NV-RDAC and Founder of Cure 4 The Kids Foundation

The data gathered through NV-RDAC’s Patient & Family Needs Assessment has already impacted legislative action. As the founder of Cure 4 The Kids Foundation and Board Chair of NV-RDAC, I used insights from the survey to reinforce advocacy efforts during Nevada’s 2025 legislative session. The patient experiences documented through the assessment helped lawmakers understand the real-world impact of policy gaps in rare disease care.

That advocacy resulted in two landmark bills: Senate Bill 189, which established licensing for genetic counselors and recognized genetic counseling as a reimbursable medical service, and Senate Bill 348, which modernized Nevada’s newborn screening program to ensure every baby receives comprehensive testing for life-threatening conditions.

These legislative victories demonstrate how patient voices directly shape Nevada policy. When families share their experiences through the needs assessments, those stories become the foundation for systemic change. Learn more about Nevada’s 2025 rare disease legislative wins.

What NV-RDAC Has Accomplished Through Listening

Despite resource constraints, NV-RDAC has made significant progress in several key areas by prioritizing stakeholder engagement and collaborative problem-solving:

Building Nevada’s Rare Disease Data Infrastructure: NV-RDAC has initiated foundational efforts to establish a statewide rare disease registry, with particular focus on childhood cancer, sickle cell disease, and newborn screening conditions. These efforts, in collaboration with Cure 4 The Kids Foundation and DHHS, will provide Nevada with crucial data to assess the incidence, causes, and economic impact of rare diseases.

Creating Meaningful Stakeholder Engagement: The council has made stakeholder engagement a cornerstone of its efforts to address the needs of Nevada’s rare disease community. NV-RDAC has actively engaged with a broad spectrum of stakeholders, including rare disease patients, healthcare providers, advocacy groups, lawmakers, and nonprofit organizations. Through these engagements, the council has gained critical insights into the challenges faced by those living with rare diseases.

Raising Public Awareness: NV-RDAC’s successful “While You Wait” campaign and its presence on social media have significantly raised public awareness about rare diseases, supplemented by live television appearances and print media coverage of council activities.

Advocating for Policy Changes: Although NV-RDAC does not have the authority to submit bill draft requests directly, the council has successfully collaborated with legislators—from state senators to the governor—to introduce and sign into law important bills. As mentioned above, NV-RDAC informed advocacy efforts have directly resulted in the expansion of the newborn screening program, increased medical reimbursements for pediatric cancer patients on Medicaid, access to pediatric specialized care, and more.

Strengthening Healthcare Partnerships: Through partnerships with DHHS and Cure 4 The Kids Foundation, the council has improved data collection processes, particularly for childhood cancer and sickle cell cases. The upcoming development of a comprehensive childhood cancer and rare disease registry will further streamline these efforts, ensuring Nevada’s rare disease data is both accurate and efficiently managed.

When people feel safe to speak, systems become safe to trust.

Every Voice Matters in Rare Disease Advocacy

Every patient deserves to be heard. Every provider deserves to be supported. And every policymaker deserves to understand the truth directly from the people who live it.

Nevada’s rare disease community is leading that transformation, one story, one survey, one shared truth at a time. The dual needs assessments represent more than data collection. They represent a commitment to ensuring that Nevada’s rare disease policies and programs are built on the real experiences of patients, families, and the healthcare providers who care for them.

With millions of people affected by rare diseases in Nevada, the collective impact on public health, healthcare systems, and affected individuals and families is substantial. Efforts to raise awareness, improve diagnosis and treatment, and support research into rare diseases are essential for addressing the needs of those affected by these conditions.

In Nevada, the path forward begins with listening. Your participation in these assessments helps create a healthcare system where no one’s voice goes unheard, where providers have the resources and support they need, and where families can find the care and answers they deserve without years of searching in silence.

Silence costs too much, and in healthcare, listening saves lives.

Take Action Today

Patients, Families, and Caregivers: Share your experience with rare disease care in Nevada:

TAKE THE PATIENT & FAMILY NEEDS ASSESSMENT

Healthcare Providers: Help us understand how to better support you in caring for rare disease patients:

TAKE THE HEALTHCARE PROVIDER NEEDS ASSESSMENT

Your voice shapes Nevada’s future rare disease policy and support systems. The more voices we hear, the better we can serve our community.

About the Author: Annette Logan-Parker brings over 30 years of experience in pediatric oncology to her role as Founder and Chief Advocacy & Innovation Officer at Cure 4 The Kids Foundation. She has dedicated her career to improving outcomes for children with cancer and ensuring equitable access to cutting-edge treatments for all families.