Rare Disease Council


In 2021, Virginia created the Rare Disease Council for the purpose of:

  1.  advising the Governor and the General Assembly on the needs of individuals with rare diseases in the Commonwealth
  2. identifying challenges that such individuals face, including delays in obtaining a diagnosis or the receipt of a misdiagnosis, shortages of medical specialists who can provide treatment, and lack of access to therapies and medication used to treat rare diseases
  3. funding research related to rare diseases and the development of new treatments for rare diseases; and
  4. funding for supports for persons with rare diseases in the Commonwealth.

Virginia General Assembly 2021 Special Session I: View full bill

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

The Rare Disease Council meets quarterly.

Meeting schedule for 2022:

March 29 (virtual)
May 17  (in person)
September 20 (in person)
November 29 (format TBD)

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