February 25, 2018 at 9:00 am Washington, DC

Rare Disease Week on Capitol Hill

Rare Disease Legislative Advocates (RDLA) is excited to host patients, caregivers, physicians and other advocates from across the country at Rare Disease Week on Capitol Hill 2018. Join to educate Members of Congress and help shape healthcare policy to better meet the needs of rare disease patients and their families.

Please mark your calendar for the following events, all of which are free for rare disease advocates:

  • Sunday, February 25th, 5:30-9:30pm: Cocktail Reception and Rare Disease Documentary Screening at the Naval Heritage Center
  • Monday, February 26th, 9am-5pm: Legislative Conference at the Ronald Reagan Building
  • Tuesday, February 27th, 7-8:30am: Lobby Day Breakfast at the Washington Court Hotel on Capitol Hill
  • Tuesday, February 27th, 9am-5pm: Lobby Day Meetings with Members of Congress on Capitol Hill
  • Wednesday, February 28th, 12-1:30pm: Rare Disease Congressional Caucus Briefing on Capitol Hill
  • Wednesday, February 28th, 5-7pm: Rare Artist Reception on Capitol Hill
  • Thursday, March 1st, 8:30am-4pm: Rare Disease Day at the National Institutes of Health (NIH) at the NIH campus in Bethesda, MD

Registration for our events will open on January 3, 2018.

Introductory Webinar on December 6th

RDLA encourages anyone interested in attending Rare Disease Week on Capitol Hill to join for a webinar on Wednesday, December 6th, at 2pm ET/11am PT for an overview of the events and the opportunity to ask questions. You can register here.

Applications for Travel Stipends Due by December 10th

The EveryLife Foundation for Rare Diseases will provide travel stipends to enable advocates from across the country to participate. In order to receive a stipend, advocates must attend the Legislative Conference and Lobby Day. Stipends range from $400 to $1,000 depending on the distance to be traveled, and are limited to one per family. Applications are available online through December 10th. All applicants will be notified by December 18th.

Hotel Room Block

RDLA has a limited number of rooms reserved at the Washington Court Hotel at the rate of $219 per night plus tax. To book a room, please call 1-800-321-3010 and mention “EveryLife Foundation for Rare Diseases” for the group rate. Service animals are welcome and Wi-Fi is complimentary.

For more information, please visit the Rare Disease Week on Capitol Hill webpage.


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