Pennsylvania was among the first of the more than 20 states that now have a Rare Disease Advisory Council.
A rare disease as a disease or condition that affects fewer than 200,000 people in the U.S.
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).
1.2 million Pennsylvanians—one in 12—live with a rare disease.
More than 250 new rare disorders are identified annually.