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OUR STANDARDS

Pennsylvania is one of just eight states that has established a Rare Disease Advisory Council.

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A rare disease as a disease or condition that affects fewer than 200,000 people in the U.S.

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It is estimated that there are 7,000 rare diseases affecting 30 million Americans, or 7 to 8 percent of the population, according to the National Organization for Rare Disorders (NORD).

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1.2 million Pennsylvanians—one in 12—live with a rare disease.

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More than 250 new rare disorders are identified annually.

RESOURCES

Check out resources for
Lawmakers and Advocates

CONTACT US

We strive to provide transparency and honesty to all people of the rare disease community in Pennsylvania. Let us know if you have questions.