Rare Diseases: Perspectives on Progress

Location: 
Washington Court Hotel
Address: 
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

Terri Schwartzbeck
Senior Manager of Communications 
571-482-2719

You can change the image of things to come. But you can’t do it sitting on your hands … The science community should reach out to Congress and build bridges.
The Honorable John E. Porter