In 2021, Virginia created the Rare Disease Council for the purpose of:
- advising the Governor and the General Assembly on the needs of individuals with rare diseases in the Commonwealth
- 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
- funding research related to rare diseases and the development of new treatments for rare diseases; and
- 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)