Register NOW for Rare Disease Week on Capitol Hill

Register now to join patients, caregivers, physicians and other advocates from across the country at Rare Disease Week on Capitol Hill, to be held February 29th through March 3rd. Each of the events is free and open to any rare advocate, but advance reqistration is required.

We are pleased to have experts from the Food and Drug Administration (FDA), National Institutes of Health (NIH) and patient organizations confirmed as speakers at the Legislative Conference, which aims to empower each advocate to successfully build effective relationships with their Members of Congress. You can view the agenda hereAttendance at the Legislative Conference is necessary for anyone participating in Lobby Day, and you must register for both by midnight TONIGHT to allow time to schedule your Hill meetings.

Rare Disease Week on Capitol Hill includes:

  • Monday, February 29th, 7:30am – 3:30pm: Rare Disease Day at NIH Registration is open and available here.*

*Shuttles will be available to transport advocates from NIH to the cocktail reception and documentary screening. Wheelchairs can be accommodated.

  • Monday, February 29th, 5:30 – 9:30pm: Cocktail Reception and Rare Disease Documentary Screening featuring Dusty’s Trail: Summit of Borneo at the U.S. Naval Heritage Center
  • Tuesday, March 1st, 8:30am – 5:30pm: Legislative Conference at FHI 360
  • Wednesday, March 2nd, 7:30 – 9am: Lobby Day Breakfast at the Capitol Hill Club
  • Wednesday, March 2nd, 9am – 5pm: Scheduled Meetings with Members of the House and Senate
  • Thursday, March 3rd12-1:30pm, Congressional Rare Disease Caucus Briefing in the U.S. Capitol Visitor Center
  • Thursday, March 3rd5-7pm: Rare Artist Reception in the Rayburn House Office Building

You can download a complete schedule of events with addresses and Metro stops here.

Preparatory Webinars

Advocates are encouraged to join us for both webinars to help prepare them for a productive experience.  You can watch the first webinar, which provided an overview of the various events held during Rare Disease Week on Capitol Hill, hereRegistration is open for the second webinar, to be held on February 23rd at 2pm EST, which will provide more detailed advice to participants such as what to wear and what to bring for each event, and where to find additional resources. There will be an opportunity to ask questions.

Deadline Extended to February 21st for Rare Disease Advocate Perspectives

If you are unable to join us for Rare Disease Week on Capitol Hill, you can still make a difference! Please submit your unique perspective as a rare disease advocate by February 21st to be hand-delivered to your Representative and Senators. We want every Member of Congress to hear from constituents affected by rare disease, so please share this link in newsletters and on social media.

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