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

Posted on November 14, 2025November 14, 2025 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.

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.
And the children we serve wait years longer than they should for the cures they deserve.

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.

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.

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

Posted on November 12, 2025November 12, 2025 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.

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.

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.

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.

“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.