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House of Representatives
Session of 2019 - 2020 Regular Session


Posted: May 6, 2019 03:51 PM
From: Representative Marcy Toepel and Rep. Mark Longietti
To: All House members
Subject: Rare Disease Day in Pennsylvania – May 7, 2019
We are going to introduce a resolution today designating May 7, 2019 as “Rare Disease Day” in Pennsylvania.

There are approximately 1.2 million Pennsylvanians who suffer from rare diseases, and nearly 7,000 such diseases exist. According to the National Institutes of Health (NIH), nearly 30 million Americans have rare diseases, of which more than half are children. A disease is considered rare if it affects fewer than 200,000 Americans. The diseases tend to be serious and life-threatening and lack an effective treatment.

Introduced as HR316