Mission Statement:
On behalf of those impacted by rare diseases in the Commonwealth of Virginia, the Rare Disease Council shall:
- Advise the Governor and the General Assembly on the needs of those affected by rare diseases;
- Identify challenges and barriers faced by those affected with rare diseases; and
- Direct funding of research and supports for persons with rare diseases.
Vision Statement:
To serve as a voice for Virginia’s Rare Disease Community by advising policymakers and empowering families and individuals affected by rare diseases.
Rare Disease Survey:
In an effort to support the Virginia Rare Disease Council's mission and vision, we encourage you to complete the anonymous Rare Disease Survey.
History:
The Rare Disease Council was established on July 1, 2021 in sections 32.1-73.14 through 32.1-73.17 of the Code of Virginia as a result of HB1995.
Meetings:
The Rare Disease Council meets quarterly and meeting information can be found on Virginia Regulatory Town Hall under Regulatory Board: State Board of Health.
2025 Meeting Schedule:
- February 25, 2025
- May 20, 2025
- August 20, 2025
- November 19, 2025
Membership:
Individuals interested in serving on the Rare Disease Council may submit an application on the Secretary of the Commonwealth’s Boards and Commissions webpage.