Five Ways YOU Can Participate in Rare Disease Week on Capitol Hill Remotely

We know that traveling to Washington, DC isn’t on option for all advocates. In order to better serve the rare disease community, we’ve provided a number of ways for advocates to participate in Rare Disease Week on Capitol Hill remotely. Below are five ways you can make your voice heard during next week’s events.

  • Monday: Watch the livestream of the Legislative Conference on Monday, February 26th to learn about key legislation affecting the rare disease community. The draft agenda is available here, and you can register for the free livestream here.
  • Tuesday: Call your Members of Congress on Lobby Day on Tuesday, February 27th. The one-page background papers for each of the key legislative issues discussed at the Legislative Conference will be available here prior to Rare Disease Week. 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.
  • Wednesday: On Wednesday, February 28th, join our Rare Disease Congressional Caucus briefing via livestream from 12:30 – 1:45 PM EST.  Titled “The Rare Disease Lifecycle: Diagnosis to Treatment”, this briefing will provide insights on a number of steps in a rare disease patient’s journey.
  • Thursday: Watch the livestream of Rare Disease Day at the National Institutes of Health (NIH) on Thursday, March 1st. The agenda and link to register are available on the NIH website. Speakers include leaders from NIH and the Food and Drug Administration (FDA), as well as representatives from a number of patient advocacy groups.
  • Social media: Stay engaged with our acitivites by connecting with us on FacebookTwitter and Instagram. On Twitter, we’re @RareAdvocates; On Instagram, we’re @Rare_Advocates. For posts related to Rare Disease Day or your own advocacy efforts, be sure to use our event hashtag, #RareDC2018, and to tag RDLA in your posts.

We hope that you will take part in these remote participation opportunities!  If you have questions regarding any of these events, please email Grant Kerber at

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