Rare Disease Week Needs You

Rare disease day is on February 28th. 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 this annual event.

The Amyloidosis Research Consortium is taking six 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 join us and our advocates at Rare Disease Week in D.C., February 27th through March 2nd, you can still make your voice heard on Capitol Hill and participate in some of the programming.

Here are four ways to participate remotely:

  1. Watch the livestream of Rare Disease Day at the National Institutes of Health (NIH) on Monday, February 27th. 
  2. Watch the livestream of the Legislative Conference on Tuesday, February 28th
  3. Call your Members of Congress on Lobby Day on Wednesday, March 1st.
  4. Email your Members of Congress on Lobby Day on Wednesday, March 1st. 

All the information you need to participate including key messages to share with your members of congress, can be found here at the EveryLife Foundation Website


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