Rare Disease Advisory Council seeks input for healthier Nevada

BY ANNETTE LOGAN-PARKER SPECIAL TO LAS VEGAS BUSINESS PRESS

March 5, 2024 – 9:37 am

Recall your last visit to the doctor’s office. It’s likely that you spent a significant (and possibly frustrating) amount of time waiting in the lobby or even in the exam room before your turn finally arrived.

While I wish I could provide a solution to reduce those waiting times, I must admit that I can’t. However, what I can offer you is an opportunity to make the most of your “wait time” while contributing to a cause that helps our state gain a deeper understanding of the challenges faced by those affected by rare diseases.

In the United States, more than 7,000 rare diseases impact over 30 million individuals. Some of these conditions are exceedingly rare, affecting a handful of families in an entire county. Others, however, touch the lives of hundreds or even thousands of people, including many who live right here in Nevada.

Surprisingly, you may know someone grappling with a rare disease without even realizing it. For instance, childhood cancer is classified as a rare disease. Likewise, many adult forms of cancer fall into this category. Conditions such as sickle cell anemia, hemophilia, various bleeding and clotting disorders, cystic fibrosis, Duchenne Muscular Dystrophy and approximately 50 lysosomal storage diseases, including Pompe disease, Fabry disease and Gaucher disease, all fall under the rare disease umbrella.

In broad terms, a rare disease is one that affects fewer than 200,000 individuals. To ensure Nevada can allocate the necessary resources, treatment options and related services, it’s crucial to have a clear perspective on the number of families impacted by these conditions within the state. And this is where you come in.

The Nevada Rare Disease Advisory Council (NVRDAC) has been tasked with the objective of conducting a comprehensive statistical analysis of the occurrence, causes and economic impact of rare diseases in the state. In order to accomplish this objective, they have put together a statewide needs assessment in the form of an anonymous survey aimed at providing invaluable insights into the prevalence of rare diseases. The “While You Wait” campaign offers you the chance to complete this survey while waiting for your doctor’s appointment. The Nevada Rare Disease Advisory Council (RDAC) is actively seeking survey participants to help identify the extent of rare diseases in Nevada.

In collaboration with medical providers, urgent care centers and various medical offices, we are making every effort to make this survey readily accessible. We’ve asked medical providers to post the flyers with an easily accessible QR code in exam rooms, front offices, waiting areas and anywhere patients will notice them. If you prefer not to wait for your next doctor’s visit, you can complete the survey online at redcap.link/nvrdac .

The “While You wait” needs assessment allows the RDAC to gather insights from individuals who are directly affected by rare diseases or have family members impacted by them.

The survey or “needs assessment” represents just the initial phase of the NVRDAC’s mission. The council’s objectives extend to ensuring that medical providers across the state, both in urban and rural areas, possess the knowledge and awareness required to identify rare diseases, recognize their symptoms and provide appropriate care.

Additionally, the council will explore the consequences of delayed or inadequate treatment on patients’ quality of life and its impact on Nevada’s economy. Finally, the council will examine treatment delivery systems for rare diseases and formulate recommendations aimed at extending the lifespan and improving the quality of life for these patients.

Annette Logan-Parker serves as the chair of the Nevada Rare Disease Advisory Council. Logan-Parker is a former nurse and the founder and former CEO of the Cure 4 The Kids Foundation (C4K), Southern Nevada’s sole pediatric cancer and rare disease treatment center. She now holds the position of C4K’s chief innovation and advocacy officer.

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