Click to view the 2023-2025 Strategic Plan. The strategic plan for the NV-RDAC aims to enhance awareness, resources, and access to care for individuals and families affected by rare diseases statewide.
Our Mission:
The NVRDAC’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.
Click here to learn more about the Cellular and Gene Therapy (CGT) Access Model
Click to view the compiled annual report to the Governor and legislative that includes a summary of the council’s activities and any recommendations of the council for legislation or other policies per NRS 439.5077.
To view Nevada’s Rare Disease Report Card, click below:
Who We Are:
The Nevada Rare Disease Advisory Council (NVRDAC) was formed under SB315 during the 2019 legislative session of the Nevada legislature. The NVRDAC is an advising body that provides a platform for those living in Nevada who are affected by a rare disease. 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.
What We Do:
The Nevada Rare Disease Advisory Council (NVRDAC) was formed under SB315 during the 2019 legislative session of the Nevada legislature. The NVRDAC is an advising body that provides a platform for those living in Nevada who are affected by a rare disease. 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.
Rare Disease Advisory Council
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 at 9:30am PST. To participate in our meetings, click here.