We are excited to host patients, caregivers and other advocates from across the country at Rare Disease Week on Capitol Hill, to be held February 27 through March 2, 2017. There will be many new members of the House of Representatives and Senate who need to hear from members of their community impacted by rare disease. Rare Disease Week on Capitol Hill is an opportunity for YOU to help educate the new Congress and shape healthcare policy to better serve the rare disease community.

Introductory Webinar on December 7th

We encourage anyone interested in attending Rare Disease Week on Capitol Hill to join us for a webinar on Wednesday, December 7th, at 2pm ET for an overview of the events and the opportunity to ask questions. You can register HERE.

Applications for Travel Stipends Due by December 18th

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 $300 to $1,000 depending on the distance to be traveled, and are limited to one per family. Applications are available online through December 18th.

Mark your calendar: February 27th through March 2nd

All of the events are free for rare disease advocates.

  • Monday, February 27th: Rare Disease Day at the National Institutes of Health
  • Monday, February 27th5:30-9:30pm: Cocktail Reception and Rare Disease Documentary Screeningpresented by Vertex Pharmaceuticals featuring Up for Air at the Naval Heritage Center
  • Tuesday, February 28th, 9am-5pm: Legislative Conference presented by Horizon Pharma at FHI 360
  • Wednesday, March 1st, 7-8:30am: Lobby Day Breakfast at Hyatt Regency on Capitol Hill
  • Wednesday, March 1st, 9am-5pm: Lobby Day Meetings with Members of Congress on Capitol Hill
  • Wednesday, March 1st5-7pm: Rare Artist Reception on Capitol Hill
  • Thursday, March 2nd12-1:30pm: Rare Disease Congressional Caucus Briefing presented by Amgen in the U.S. Capitol Visitor Center

Registration will open on January 4, 2017.

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