HARRISBURG – In honor of National Rare Disease Day on Feb. 28, Reps. Marcy Toepel (R-Montgomery) and Mark Longietti (D-Mercer), as well as Sens. Judy Ward (R-Blair/Cumberland/Franklin/Fulton/Huntingdon) and John Blake (D-Lackawanna/Luzerne/Monroe) will serve as co-chairs for Pennsylvania’s Rare Disease Caucus for the 2019-20 Legislative Session.
Toepel, Longietti, Ward and Blake will work with their colleagues to advocate for the estimated 1.2 million Pennsylvanians – more than half of them children – affected by a rare disease, which is any disease impacting fewer than 200,000 people. With more than 7,000 rare diseases, there are many diseases that medical researchers are not studying.
Pennsylvania has been making great strides to be a leader in the rare disease space. After passing unanimously in both chambers, House Bill 239 was moved to Gov. Tom Wolf’s desk and signed into law in July 2017. Act 14 created the Pennsylvania Rare Disease Advisory Council, which serves as the advisory body on rare diseases to the General Assembly and all other relevant state and private agencies that provide services to, or are charged with the care of, individuals with rare diseases. Its first report was submitted to the Legislature and governor last July.
“One of the most important roles we can play in state government is to connect available resources and information with citizens who need them. As members of both the Legislature and the Rare Disease Advisory Council, we look forward to working with other patient advocates, caregivers and Life Sciences PA during the next two years,” shared the Rare Disease Caucus chairmen.
The Rare Disease Caucus and its members will participate in the Pennsylvania Rare Disease Awareness Day press conference on Tuesday, May 7, at 10 a.m. in the main rotunda of the Capitol.