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.

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.