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Nevada Rare Disease Advisory Council

Empowering Nevadans Living with a Rare Disease to Improve Their Future

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Who We Are

The Nevada Rare Disease Advisory Council (NV-RDAC) was formed under SB315 during the 2019 legislative session of the Nevada legislature. The NV-RDAC is an advising body of volunteers and advocates from all walks of life that provides a platform for those living in Nevada who are affected by a rare disease.

What We Do

Our goal is to provide this community a stronger voice in state government. Many other states have established RDACs which have resulted in providing stakeholders an opportunity to make recommendations to state leaders on critical issues including the need for increased awareness, diagnostic tools, and access to affordable treatments.

Our Mission

The NV-RDAC's mission is to improve the quality of life and support care for Nevadans affected by rare diseases through collaboration, education, support, and advocacy. Our council seeks to advocate for Nevadans impacted by rare diseases as well as identify the overall impact these diseases have in our community.

Rare diseases aren't rare.
They impact millions.

Fewer than 200k
affected...per disease

It's true that a rare disease is defined as a condition or disorder that affects fewer than 200,000 individuals in the United States.

7,000 known
rare diseases

Currently, there are approximately 7,000 known rare diseases.

25–30 million
Americans

25-30 million Americans are affected by these rare disorders. While individuals with certain disorders may be rare, the total number of people with rare diseases is large.

The numbers tell the story.

Our 2024 Rare Disease Needs Assessment surveyed hundreds of individuals living with rare diseases, their family members, and caregivers to understand the real barriers families face accessing care across the state. 

0 Unique

Unique rare diagnoses represented

0 + Years

Some families spent searching for a diagnosis

0 %

Were unaware of clinical trials relevant to their condition

0 +

Nevadans living with rare disease and those who care for them

$ 0 +

In annual out-of-pocket costs for many families

0 +

Specialists seen before receiving a diagnosis

Read the 2024 Needs Assessment & Data Summary

Our Work in Action

Learn how we’re advancing care for Nevada’s rare disease community. Read our 2026–2028 Strategic Plan and our 2025 Annual Report.

Behind every policy recommendation is a Nevada family waiting for answers. The NV-RDAC works to close the gaps in diagnosis, treatment, and access that have historically left rare disease patients behind.

Access the NV-RDAC Archives
2026–2028 Strategic Plan
2025 Annual Report

Nevada's rare disease community needs your voice.
Here's how to use it.

Participate in a meeting

We welcome the public to participate in the rare disease advisory meetings! Our meetings are open to the public and take place the first Friday of every month 9:30am PST.

Get Involved

Become a council member

Whether you are a patient, caregiver, healthcare provider, researcher, policymaker, or advocate, your voice matters. The NV-RDAC exists to ensure that every perspective is heard and translated into action that improves lives.

LEARN MORE

Connect with us on social media

Join the conversation. Follow us to keep up with rare disease policy, council activity, and opportunities to make a difference in Nevada.

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Join Us!

Whether you’re a patient, caregiver, healthcare provider, researcher, policymaker, or advocate, your voice matters. The NV-RDAC exists to ensure that every perspective is heard and translated into action that improves lives.

BECOME A COUNCIL MEMBER
PARTICIPATE IN A MEETING

Rare disease resources & education

Knowledge is one of the most powerful tools a rare disease family can have. These trusted organizations provide research, advocacy, and support to help you find answers, connect with others, and take the next step. Click the link below to explore.

FIND RESOURCES

From the Journal

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