MARYLANDRARE - HISTORY
2023 - Rare Disease Advisory Council (RDAC) - SB0188/HB0302 - Passed!
Establishing the Rare Disease Advisory Council to study and make recommendations on matters relating to individuals with rare diseases in the State; requiring the Council to convene public hearings, make inquiries, and solicit comments from the public on the needs of rare disease patients, caregivers, and health care providers; requiring the Council to report to the Governor and General Assembly by December 1 each year beginning in 2024 and provide recommendations on ways to address the needs of persons with rare diseases in the State; etc.
Senate Bill - SB0188 - Click Here
Maryland Governor Signs Legislation to Address Needs of Rare Disease Patients and Families Throughou
Public Health - Rare Disease Advisory Council HB0302 (SB0188)
May 3, 2023, Annapolis, MD – Patients and families in Maryland’s rare disease community celebrate the passage of Senate Bill 188 (SB 188)/House Bill 302 (HB 302), which officially establishes a Rare Disease Advisory Council (RDAC) in their state.
Support the MD Rare Disease Community Today!
On May 12, 2022, Gov. Larry Hogan signed RUSP alignment bills, HB 109 (Shetty) and SB 242 (Hershey)
Championed by EveryLife Foundation, Maryland is now the tenth state to pass such historic legislation. However, it would not have been possible without the support and dedication of our own rare advocates such as Jennifer Payne and Claudia Fennel and others, who provided riveting testimony during the hearings. Thank you everyone for your advocacy and support. To learn about this ground breaking moment, click the following link: