Can’t Attend Rare Disease Week? Five Ways to Participate Remotely

Rare disease day is on February 28th and every year the Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases, hosts Rare Disease Week on Capitol Hill. The entire week provides a unique opportunity to raise awareness of key policy issues that affect amyloidosis. Patient organizations, NIH and other government entities, medical researchers and pharmaceutical companies developing treatments for rare diseases all take part in the event.

The Amyloidosis Research Consortium (ARC) is taking advocates from across the country to Capitol Hill for the week where they will learn to be effective advocates and meet with their representatives on the Hill. There they will share their personal experiences with the disease and discuss key policy issues that impact our community.

If you are not able to attend in person you can still participate in activities throughout the week:

  • Monday, February 26th: Watch the livestream of the Legislative Conference to learn about key legislation affecting the rare disease community. You can register for the free livestream here.
  • Tuesday, February 27th: Call your Members of Congress on Lobby Day. You will be able to read about key legislative issues discussed at the Legislative Conference on the RDLA website prior Rare Disease Week. You can find contact information for your elected officials here.
  • Wednesday, February 28th: Join the Rare Disease Congressional Caucus briefing via livestream from 12:30pm–1:45pm EST where ARC CEO Isabelle Lousada will be speaking about modernizing clinical trial design. You can find the livestream here.
  • Thursday, March 1st: Watch the livestream of Rare Disease Day at the National Institutes of Health (NIH). Speakers include leaders from NIH and the Food and Drug Administration (FDA), as well as representatives from a number of patient advocacy groups. You can find the livestream here.
  • Social media: Stay engaged with the activities by connecting on social media. On Twitter follow RDLA @RareAdvocates and ARC @Amyloidosis_ARC and use hashtag #RareDC2018. On Facebook you can follow RDLA and Amyloidosis Research Consortium to get the latest updates.

All the information you need to participate, including key policy issues, can be found here on the RDLA website.

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