OUR MISSION
Improving lives for Pennsylvanians who live with a rare disease
The PA Rare Disease Advisory Council is a resource for patients, physicians, and families to help those living with a rare disease.
WHO WE ARE
The PA Rare Disease Advisory Council serves as an advisory body on rare diseases to the General Assembly and all other relevant state and private agencies that provide services to or are charged with the care of individuals with rare diseases. Its mission is to improve the quality of life for all those affected by rare diseases in Pennsylvania.
WHAT WE DO
Resources for an underrepresented part of the medical community in PA
The PA Rare Disease Advisory Council (PARDAC) serves as an advisory body on rare diseases to the General Assembly and all other relevant state and private agencies that provide services to or are charged with the care of individuals with rare diseases. Its mission is to improve the quality of life for all those affected by rare diseases in Pennsylvania. The council was created through legislation (House Bill 239) and signed into law as Act 14 on July 7, 2017 by Governor Tom Wolf. The council consists of the secretaries of Health, Human Services, and Education (or their designees), the Insurance Commissioner (or his/her designee), and members of the public, including various health practitioners, health insurers, researchers, parents of children with rare diseases, self-advocates and others with expertise in providing care to individuals with rare diseases.
DATA
1.2 Million Pennsylvanians live with a rare disease.
0
Recognized Rare Diseases0%
of rare diseases affect children0 million
Americans living with a rare disease0%
of rare diseases have genetic origins
