Longietti bill to help a million people combat rare diseases signed by governor

Harrisburg, July 7 – A bill aimed at helping 1.2 million Pennsylvanians suffering from a rare disease is now law. House Bill 239, sponsored by Rep. Mark Longietti, D-Mercer, and Rep. Marcy Toepel, R-Montgomery, was signed by Gov. Tom Wolf today, which will create the Rare Disease Advisory Council.

“It’s startling to hear about the thousands of rare diseases that are out there that many don’t even know about and go untreated,” Longietti said. “This council will help improve the lives of those suffering from a rare disease, which, in the end, is the most important feature."

The Rare Disease Council will act as a partnership between patients and their families, medical providers, insurance groups and other agencies to support the needs of those dealing with these illnesses. In addition to health care professionals and industry and scientific representatives, the council will include both individuals suffering from a rare disease and parents of children with a rare disease.

The council will be tasked with:

  • Researching and determining the most appropriate method to collect rare disease data

  • Identifying priorities relating to quality and cost effectiveness of access to treatment and other services

  • Developing policy recommendations

  • Creating strategies to raise public awareness

  • Preparing and delivering a preliminary and comprehensive report of its findings

"Recently, I heard from a constituent from Mercer County who suffers from Rosai-Dorfman disease, a rare disease affecting the lymph nodes. I am pleased that we took an important step today to help her and others and to restore hope as they battle these rare diseases," Longietti explained.