Please join Research!America for


Rare Diseases: Perspectives on Progress


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 focused on progress in advancements in rare disease and the current development 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% of those affected by rare diseases are children, highlighting the need for robust research, as well as collaboration among the patient and stakeholder communities to develop cures for these challenging diseases. 


Program: 5:00 p.m. – 6:00 p.m.


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

  • Moderator: Mary Woolley, President and CEO, Research!America
  • Srini Ramanathan, PhD, Vice President of Developmental Sciences, Horizon Pharma
  • Kurt Newman, MD, President and CEO, Children's National Health System
  • Shane 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: 6:00 p.m. – 7:30 p.m. 

  Supported in part by


In partnership with


For questions, contact Sara Chang at


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