Dear Advocates,
Just over five months ago COVID-19 brought the world to a halt. But the COVID pandemic has not stopped the advocacy efforts of the rare disease community; it has not even slowed us down. Our community has always had to do things differently, to pivot and reimagine — and this year has been no exception. As a community, we will never stop fighting for legislation and policy that advances the development of, and access to, diagnostics and treatments.
We are very excited for the next 16 months of advocacy events to ensure that our rare disease community continues to have an impactful voice in policy. We are especially excited to share that we have moved our dates for Rare Disease Week on Capitol Hill to July 19th – 22nd to ensure we can all be together again in person in 2021.
The scientific community is mobilizing and collaborating and moving at speeds it never has before. We must continue to ensure that this momentum continues and that the priorities of the rare disease community remain a priority for our nation’s policy makers beyond the COVID Public Health Emergency.
We hope you will join us as we continue our advocacy efforts. Without YOU, none of our work would be possible. United together we will change policy and save lives.
Thank you,
Julia Jenkins
Executive Director
EveryLife Foundation for Rare Diseases
Register for our 2020 Virtual Experiences
- Rare Disease Congressional Caucus Briefing on Diagnostics and Newborn Screening (September 22nd)
- Newborn Screening Bootcamp (September 30th, Oct. 7th, 14th, 21st, 28th)
- Community Congress Annual Meeting (December 9th)
- RareVoice Awards(December 10th)
- Rare Disease Scientific Workshop (December 15th)
Mark Your Calendars for our 2021 Events
- Rare Across America – Educate the New Congress Virtually (February 22nd – March 5th)
- Rare Disease Week on Capitol Hill, Washington, D.C. – (July 19th – 22nd)
- Rare Disease Scientific Workshop, Washington, D.C. (September 14th)
- Newborn Screening Bootcamp, Sacramento, CA (October 2nd)
- 10th Anniversary RareVoice Awards, Washington, D.C. (December 7th)
- Community Congress Annual Meeting, Washington, D.C. (December 8th)
