Four Ways to Participate Remotely in Rare Disease Week on Capitol Hill


If you are not able to join rare disease advocates from across the country at Rare Disease Week on Capitol Hill on February 27th through March 2nd, you can still make your voice heard by legislators and participate in some of the programming.

Here are four ways you can participate remotely:

  1. Submit your personal story and a photo to be hand-delivered to your U.S. Representative and Senators on Lobby Day. There are many new Members of Congress and it is critical for them to hear from rare disease patients and caregivers in their local communities. This is an opportunity for YOU to help educate the new Congress and shape healthcare policy to better meet the needs of the rare disease community. Personal stories can be submitted here and are due by February 19th.
  2. Watch the livestream of Rare Disease Day at the National Institutes of Health (NIH) on Monday, February 27th. The agenda and link to register are available on the NIH website. Speakers include representatives from Global Genes, EveryLife Foundation for Rare Diseases and FasterCures as well as leaders from NIH and the Food and Drug Administration (FDA). If you are on social media, use the hashtag #RDDNIH to be part of the conversation.
  3. Watch the livestream of the Legislative Conference on Tuesday, February 28th, to learn what to expect from the new Congress and Trump Administration, how to build an effective relationship with Members of Congress and staff, and about key legislation for the rare disease community. The draft agenda is available here, and you can register for the free livestream here. If you are on social media, use the hashtag #RareDC2017 to quote speakers, comment and ask questions.
  4. Call your Members of Congress on Lobby Day on Wednesday, March 1st. The one-page background papers for each of the key legislative issues discussed at the Legislative Conference will be available here by February 24th. You can review them and decide which you might want to ask your Members of Congress to support. You can find contact information for your elected officials here.
  5. Email your Members of Congress on Lobby Day on Wednesday, March 1st. Chose the current RDLA action alerts you support. We make it easy for you to send an email to your legislators. You can ask them to join the bipartisan Rare Disease Congressional Caucus, which hosts quarterly briefings on Capitol Hill to raise awareness and educate Members and staff.

Please join us to help educate the new Congress and shape healthcare policy to better meet the needs of the rare disease community!

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