Council Members

The members on the all-volunteer Council represented all different sectors in the rare space.  The creators of Act 14 specifically required that those in the medical, biopharmaceutical, research, and insurance arenas work closely with patients, patient advocacy groups, and patients of rare to ensure that all areas of impact on Pennsylvania’s rare community are at the table.  Their role is outlined clearly in the legislation “to act as the advisory body on rare diseases to the General Assembly and to all relevant State and private agencies that provide services to, or are charged with the care of, individuals with rare diseases.” (Act of July 7, 2017 P.L. 284, No. 14).