A Zeal of Zebras Gather in Harrisburg
Representing 1.2 Million Rare Disease Pennsylvanians
WHEN: May 7, 2019 at 10:00 a.m.
WHAT: National Organization of Rare Disorders (NORD)and Life Sciences PA promote Rare Disease Day. Rare Disease Caucus Co-Chairs Senators John Blake and Judy Ward, and Representatives Marcy Toepel and Mark Longietti will make remarks honoring Pennsylvania’s Rare Disease Awareness Day.
WHY: 1 in 10 Americans live with a rare disease—affecting 1.2 million people in Pennsylvania alone—more than half of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments. Many diseases have insufficient funding, awareness, and research and are often crowd-funded for treatment.
WHO: In addition to the speakers below, members of the House and Senate have been invited and will be recognized from the podium. Members of the PA Rare Disease Advisory Council and rare diseases patients from across the Commonwealth will be in the audience.
SPEAKERS: Kristin Smedley, PA NORD Ambassador, (Bucks County), Sen. John Blake (D-Lackawanna), Sen. Judy Ward (R-Blair), Rep. Marcy Toepel (R-Montgomery), Rep. Mark Longietti (D-Mercer), Tim Boyd, Director, State Policy, NORD, Chris Molineaux, President of Life Sciences PA, Anna Payne, member of PA Rare Disease Advisory Council and CF patient (Bucks County), and Allyson Henkel, mother of Pete Henkel who passed in 2018 of SMA (Montgomery County). The event will be emceed by Marie Conley (Dauphin County), founder of The Conley Cushing’s Disease Fund and has Cushing’s Disease and Adrenal Insufficiency.
WHERE: Main Rotunda, Harrisburg Capitol