July 09, 2017
In Harrisburg Friday Governor Tom Wolf signed a bill to establish a Rare Disease Advisory Council in Pennsylvania, aiming to serve public and private agencies that serve people suffering from rare diseases.
“Far too often, individuals with rare and unique diseases can feel lost because services are not tailored to their specific needs,” Wolf said in a statement.
“We need to make sure that when a person is sick, no matter what their disease, or how rare it is, that that patient has the best care available, and that they can reach a high quality of life as they battle their health issues. This advisory council will help us do that.”
A reported 1.2 million Pennsylvanians are living a rare disease. A majority of the 7,000 rare diseases classified by the National Organization of Rare Disorders do not have treatments.
The bill was sponsored by Montgomery County House Republican Marcy Toepel. One of Toepel’s constituents suffers from Batten Disease, a genetic disorder on the body’s cells with no cure.
The advisory council will be required to meet at least three times a year, advising the General Assembly and other agencies.
New Jersey and North Carolina are among the states with such advisory agencies already in place.