Updated: Oct 24
Since 2018, members of the CMD community have attended Rare Disease Week on Capitol Hill hosted by the Rare Disease Legislative Advocates, which is part of the EveryLife Foundation for Rare Diseases. Held during the last week of February, this multi-day event brings together rare disease advocates from across the country to make their voices heard by their Members of Congress. You don't need to know anything about advocacy or policy to participate in Rare Disease Week, because you will first attend a day-long conference to learn about policy proposals impacting the rare disease community. Once you are equipped with the tools you need to advocate, you will attend meetings with your Members of Congress or their staff.
You have the opportunity to participate in several other events throughout the week including a Rare Disease Day conference at the National Institutes of Health, a rare disease film screening, a Rare Disease Congressional Caucus Briefing, and a Rare Artist Reception. Most importantly, you get to meet other like minded advocates who are impacted by rare diseases. CMD advocates have found this week to be empowering and inspiring.
The Cure CMD Advocacy Team is starting to make plans for Rare Disease Week 2024. We hope you will join us in D.C. February 25-29, 2024. The Rare Disease Legislative Advocates offer travel stipends to some advocates to help cover the cost of travel to D.C. If you are thinking about attending, I encourage you to apply for a stipend today. The application closes on November 8th.
Learn more at https://everylifefoundation.org/rare-advocates/rare-disease-week/ to see the 2024 schedule and to apply for a travel stipend. You can learn more about the Cure CMD Advocacy Team by emailing email@example.com
Your CMD story is important and can influence legislative policy. Your voice truly matters!