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HARRISBURG, PA — The Pennsylvania Rare Disease Advisory Council (PARDAC) today called upon the rare disease community to participate in a first-of-its-kind statewide needs assessment. The results of the survey will help provide a better picture of what rare disease patients face and guide the state’s future policies and initiatives related to rare diseases.“Since the…
HARRISBURG, Pa. – An estimated 1.2 million Pennsylvanians are diagnosed with a rare disease, often living in isolation with significant challenges in obtaining medical treatment and insurance to cover their care. On Wednesday, September 25, some of these brave Pennsylvanians traveled to the State Capitol and shared their personal stories of struggle and achievement while…
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. News headings Toepel, Longietti, Ward and Blake will work with…
Harrisburg, PA – Governor Tom Wolf today signed legislation to establish a Rare Disease Advisory Council in Pennsylvania. The law is a step forward to help more than 1.2 million Pennsylvanians suffering from a rare disease. Act 14, House Bill 239, was introduced by Representative Marcy Toepel, and establishes the Rare Disease Advisory Council, consisting…
PITTSBURGH, Penn., May 10, 2017—Today, Pennsylvania’s House of Representatives voted unanimously to pass HB 239, which would establish a Rare Disease Advisory Council and provide Pennsylvania’s 1.2 million rare disease patients with a voice in the state government. The bill now moves on to the Senate for consideration. “Helping the rare disease community starts with…