HARRISBURG, PA (CBS) — Governor Wolf has signed legislation to create a “Rare Disease Advisory Council” in Pennsylvania.
Governor Wolf says the Rare Disease Advisory Council will serve the state legislature, and all relevant state and private agencies that provide services or care for people suffering from rare diseases.
“Shining a light on issues in our health care system that those with rare diseases face, pointing us to solutions,” he said.
The bill signed by the governor was sponsored by Montgomery County House Republican Marcy Toepel, who became involved with the issue on behalf of a constituent with Batten Disease, an incurable genetic disorder that disrupts the ability of the body’s cells to dispose of waste.
“These are folks that have very little hope when they finally get the diagnosis,” Toepel said. “So to connect with other people that are perhaps going through the same thing, or people who are working on that disease, is really important to them.”
The governor says more than 1.2 million Pennsylvanians suffer from rare diseases.