DE SB55

Establishes the Delaware Rare Disease Advisory Council within the Office of the Lt. Governor to advise the Legislature and state agencies on needs of individuals with rare diseases in Delaware.

Council comprises 14 members including academic researchers, legislators, health professionals (physicians, nurses, geneticists, genetic counselors, pharmacists), hospital administrators, biopharma representatives, rare disease patients or caregivers, and scientific researchers appointed by the Governor.

Council shall conduct activities including public hearings on rare disease patient needs, develop policy recommendations for improving access to specialists and affordable healthcare coverage, research insurance coverage impacts, identify research priorities, and establish training and educational resources for healthcare providers.

Council must submit comprehensive reports to the Governor every 3 years describing accomplishments and providing recommendations to address rare disease patient needs; draft reports require public comment and discussion at open meetings before submission.

University of Delaware Institute for Public Administration shall staff the Council with annual line item funding provided to support operational services.