Connexion Healthcare proudly stood with hundreds of rare disease patients, families, advocates, supportive organizations, physicians, the Governor’s office, and state legislators at the Pennsylvania state capitol in Harrisburg yesterday to officially recognize Rare Disease Day 2016 in Pennsylvania and to raise awareness of the research, funding, and legislation needed to improve the lives of the more than 1 million Pennsylvanians living with a rare disease. Pennsylvania state legislators in attendance also announced the formation of a new bipartisan caucus in the House and Senate, to focus on issues and legislation important to the rare disease community in Pennsylvania.
The event was one of the most exciting and well-attended Rare Disease Day state-level events in the nation, according to representatives onsite from the National Organization for Rare Disorders (NORD).
Patient groups and other organizations in attendance also included the Friedrich’s Ataxia Research Alliance, the United Mitochondrial Disease Foundation, the Association for Frontotemporal Degeneration, the First Skin Foundation, the Castleman Disease Collaborative Network, the Center for Rare Disease Therapy at Children’s Hospital of Pittsburgh of UPMC, the University of Pennsylvania Orphan Disease Center, Pennsylvania BIO, Uplifting Athletes, Shire Pharmaceuticals, CSL Behring, and many others.
To join Connexion Healthcare and its Rare Disease Center of Excellence at future events like this, contact Connor Galloway at 215-944-9416 or firstname.lastname@example.org