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.

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Pennsylvania Rare Disease Needs Assessment Survey

PARDAC has created this survey to learn more about the needs of individuals, families and loved ones affected by rare diseases in the Commonwealth of Pennsylvania. Survey results will help our efforts to improve the quality of life of all those affected by rare diseases in Pennsylvania.  This survey is intended for persons with a rare disease who reside in Pennsylvania and should be completed only once for each person 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.

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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.

There are

0

Recognized Rare Diseases

0%

of rare diseases affect children
There are around

0 million

Americans living with a rare disease

0%

of rare diseases have genetic origins
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