Local Lawmakers, Nonprofits to Recognize Rare Disease Awareness Day
6/15/2018
WHAT: Rep. Marcy Toepel (R-Montgomery) has partnered with Sen. Lisa Baker (R-20), the National Organization of Rare Disorders (NORD) and Life Sciences Pennsylvania for Rare Disease Awareness Day in the Commonwealth. One of the 7,000 rare diseases affects one in 10 Americans.

WHO: Toepel; Baker; NORD; Life Sciences Pennsylvania; Marie Conley, patient with Cushing’s Disease and adrenal insufficiency, as well as founder of The Conley Cushing Disease Fund; Kristin Smedley, Curing Retinal Blindness Foundation and Pennsylvania Rare Action Network State Ambassador; Grayson Smith, 14-year-old diagnosed with a genetic vision disorder; Rachel Wiggins, mother of 4-year-old with Glycogen Storage Disorder; Dr. Marjorie Dejoie, a sickle cell patient who is also the medical director for the Sickle Cell Disease Association of America/Philadelphia; Robert Lutz, chief business officer of Strongbridge BioPharma; and Melanie Swick, policy association for NORD.

WHEN: Tuesday, June 19, at 10 a.m.

WHERE: Main Capitol Rotunda, Capitol Complex, Harrisburg.

LIVE WEBSTREAMING: RepToepel.com, barring any technical difficulties.

Media contact: Alison Evans, 717.260.6206, aevans@pahousegop.com


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