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Tracking the Hill's briefings, luncheons, receptions, and more.
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Rare Diseases: Perspectives on Progress

  • 525 New Jersey Avenue Northwest Washington, DC, 20001 United States (map)

Washington Court Hotel
525 New Jersey Ave NW, Washington, DC 20001
February 26, 2019
5:00 p.m. to 7:30 p.m.

Join Research!America and partners for a panel discussion and reception about the current rare disease research landscape. The program will provide expert discussion about the challenges and opportunities in rare disease research and the needs of the patient community. Approximately 50 percent of people affected by rare diseases are children, highlighting the need for robust research and patient and stakeholder collaboration to develop cures for these challenging diseases. 

Program: 5:00pm-6:00pm

Panel Discussion on the challenges and opportunities in rare disease research:  

Moderator: Mary Woolley, President and CEO, Research!AmericaSrini Ramanathan, PhD, Vice President of Developmental Sciences, Horizon PharmaKurt Newman, MD, President and CEO of Children's National Health SystemShane DiGiovanna, Rare Disease Patient Advocate

RAREis Playlist Presentation: My Georgia Home

Song performed by Ralph Covert, based on a story written by ten-year-old Ja’cori about living with chronic granulomatous disease

Networking reception to follow: 6:00pm-7:30pm 

Earlier Event: February 26
Meet Your Army Reserve Reception
Later Event: February 26
Outdoor Recreation Roundtable Reception