Rare Disease Legislative Associates announced today that registration is now open for Rare Disease Week on Capitol Hill, to be held from February 29th through March 3rd.

This week is a unique opportunity to learn about federal legislative issues critical to the rare disease community, network with other advocates from across the country, and share your perspective with Members of Congress. Together, we can make a difference on Capitol Hill!

SCHEDULE
The week includes a number of exciting events including:
·  Monday, February 29th, 7:30am – 3:30pm: Rare Disease Day at the National Institutes of Health (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 – 5pm: 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 3rd12-1pm, 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

Registration is required for all of these events, which are free and open to the public.

You can register at this link.

PREPATORY WEBINARS
We will hold two webinars to help advocates prepare.  Registration is open for the first webinar which will provide an overview of the various events held during Rare Disease Week on Capitol Hill, to be held on January 20th at 2pm EST. The second webinar, to be held on February 23rd at 2pm EST, 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. We strongly encourage advocates who are new to Rare Disease Week on Capitol Hill to join us for both webinars to help prepare them for a productive experience. Seasoned veterans of previous Rare Disease Weeks on Capitol Hill are welcome, too!

PATIENT STORIES
Unable to join us for Rare Disease Week on Capitol Hill? Please submit your unique patient story with us by February 15for advocates to hand-deliver to your Member of Congress.

Sign up to receive news from Rare Disease Legislative Advocates to ensure that you don’t miss any updates on Rare Disease Week on Capitol Hill! You can also follow us on Twitter and Facebook.

RDLA Would Like to thank their sponsors:

1 thought on “RDLA: Registration Open for Rare Disease Week on Capitol Hill”

  1. came across your posts while doing research for my 51 yr old sister-in-law who has developed a yet undiagnosed neuromuscular disease. For a lay person you are very knowledgable. Keep up all of your good work I am currently a snow bird in pompano beach.

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