Rare Diseases: Perspectives on Progress

Washington Court Hotel
525 New Jersey Ave NW
Washington, DC 20001
United States
Event Date: 
Tuesday, February 26, 2019
5:00 p.m. - 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% of those 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: 5:00 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 of 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.




Sponsored in part by


In partnership with

Click here to register.

Media Contacts

Robert Shalett
Director of Communications 

Luck shouldn't play a role in why I'm alive.
Laurie MacCaskill, a seven-year pancreatic cancer survivor