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House of Representatives
Session of 2017 - 2018 Regular Session


Posted: December 15, 2016 11:25 AM
From: Representative Marcy Toepel
To: All House members
Subject: Creation of Rare Disease Advisory Council (previously HB 2402)
In the near future, I plan to reintroduce legislation (previously HB 2402) to establish a Rare Disease Advisory Council within the Pennsylvania Department of Health.

According to the National Institutes of Health (NIH), one in 10 Americans live with a rare disease. Rare diseases and disorders are those which affect small patient populations, typically populations smaller than 200,000 individuals in the United States. Such diseases and conditions include Huntington's disease, Lou Gehrig's disease, Tourette syndrome, Chron's disease and Cystic Fibrosis, among others. Of the nearly 7,000 rare diseases identified by the NIH, only about 200 rare diseases have Food and Drug Administration-approved treatments.

The establishment of a Rare Disease Advisory Council will create a unique collaborative partnership between patients, providers, researchers, agencies and insurers in an effort to improve the lives of those living with one of the 7,000 devastating rare diseases. The Council's focus will be on the needs of the rare disease community and the actions necessary to address those needs.

This legislation is a top priority for the Rare Disease Caucus and is supported by the National Organization for Rare Disorders. I hope you will join me in cosponsoring this important proposal.

Introduced as HB239