Rare Disease Day 2016

Rare Disease Day 2016

On Leap Day, February 29, 2016 (the rarest day on the calendar), the Patient Experience Project (PEP) hosted Rare Disease Day at the Movies. The sold-out charity event raised money to benefit NORD’s RareCare Undiagnosed Fund, which helps patients with mysterious and undiagnosed illnesses. In addition to matching ticket sales to benefit NORD, the PEP is also making donations to each of the advocacy groups represented by the participating families.

The event succeeded in raising awareness about rare diseases and giving voice to five Capital Region families who are living with rare conditions: the DeFabio family of Ballston Spa whose son, Lucas, has Menkes disease; the Sames family of Clifton Park whose daughter, Hannah, has giant axonal neuropathy; Dylan McDonnell of Gansevoort who has Friedreich’s ataxia; the Honsinger family of Clifton Park whose son, JP, has Niemann-Pick type C; and the Wersten family of Wilton whose son, Ryan, lost his battle with malignant infantile osteopetrosis.

Special thanks to those who attended and donated, and to the many community sponsors for their generosity in supporting and promoting this event.


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