CT HB05260

Establishes the Connecticut Rare Disease Advisory Council, effective July 1, 2022, to advise the Department of Public Health and other state agencies on needs of persons with rare diseases and their caregivers.

Council shall research and recommend policies on patient access to medical care, insurance coverage, medications, diagnostics, treatment, discrimination safeguards, pediatric-to-adult care transitions, and educational materials on rare diseases.

Council membership includes 19 members: three state commissioners (or designees), two Governor appointees, and 14 members appointed by Senate and House committee leadership representing hospitals, physicians, patient advocacy groups, patients, caregivers, biopharmaceutical industry, and scientific researchers.

Initial appointments due by October 31, 2022, with first meeting by November 30, 2022; council shall meet at least six times through October 31, 2023, then quarterly thereafter in person or remotely.

Council must report annually to the Governor and General Assembly on activities, research findings, legislative recommendations, and potential funding sources for council operations.