Rare Disease Council

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.


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.


The Rare Disease Council meets quarterly and meeting information can be found on Virginia Regulatory Town Hall under Regulatory Board: State Board of Health.

2024 Meeting Schedule:

  • February 23, 2024
  • May 15, 2024
  • August 15, 2024
  • November 19, 2024


Individuals interested in serving on the Rare Disease Council may submit an application on the Secretary of the Commonwealth’s Boards and Commissions webpage.