In February 2023, members of the Cure CMD Advocacy Team joined 600 rare disease advocates from over 300 patient organizations in Washington D.C. for this year’s Rare Disease Week on Capitol Hill, sponsored by Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases. The energy was palpable as advocates from all 50 states, Puerto Rico, and the Cherokee Nation gathered in person for the first time since February 2020.
The week began with a Rare Disease Day conference at the National Institutes of Health (NIH) where we learned about their many programs that address rare disease and about the challenges and successes in rare disease research. The next day was spent at the Legislative Conference learning about legislation we could discuss with our Members of Congress and how to effectively tell our story to illustrate the importance of this legislation. We strategized with other advocates from our state and made a plan for our Hill meetings, which took place the following day. The Hill meetings are always a highlight as we shine a light on the unique challenges and needs of those affected by rare disease.
I always leave D.C. with a renewed sense of hope and purpose after Rare Disease Week. I am inspired by other advocates who are working hard to enact change that will lead to treatments and cures for rare diseases. We have a lot of work to do, but through collaboration and a unified voice, I believe our goals are possible.
But don’t take my word for it. Here are some thoughts from other Cure CMD Advocates who attended this year.
We always leave the week feeling so empowered to keep going. As a Cure CMD Community Outreach & Young Adult Advocate, it is important to me that I put a face to rare disease on the Hill. Having the chance to share our stories and connect them to public policy matters and is crucial to improving the lives of those living with CMD. Whether you were the only person representing your condition/organization or you were with your community, it did not matter. Together we were one voice. The voice of the 30 million Americans impacted by rare disease. The powerful experience consists of being able to learn about the most up-to-date public policy surrounding rare disease and meeting people on different, unique journeys as you, all while always having the commonality of rare disease. I leave as a better, more educated, and more confident person than I came. Our fight will continue, and will not conclude until we have all of the FDA-approved treatments for the more than 95% of rare diseases without, including our CMD community. I am extremely grateful to continue having the opportunity to use my voice to enact positive change on behalf of my community. - Avery Roberts
I had the incredible opportunity to attend Rare Disease week on Capitol Hill as a parent advocate for my daughter, Paige, age 10, who battles Collagen VI MD. I brought along my daughter, Claire, age 17, so she could also learn the ropes of being a young adult advocate, which she enjoyed very much!
I highly recommend taking the opportunity to get-away to our Nation's Capital for Rare Disease Week and sharing your story to help make an impact with your own state offices. Claire and I were the ONLY Rare Disease advocates to share our story with our state representative. Our story matters-your story matters, and it’s the personal connections that we make with our legislators that will help them raise their hand or sign the bill or document and allows our voice to make a difference in funding, policies, and much more. - Dee Dee Swiecki
I hope you will join us in sharing the important story of the CMD community. Watch for more opportunities to advocate in the coming year and maybe even consider attending next year’s Rare Disease Week on Capitol Hill. Your voice matters!
Save the date for Rare Disease Week on Capitol Hill 2024 taking place in Washington D.C., February 25-28, 2024! Attend a life-changing week where hundreds of rare disease community members from across the world gather to be educated on federal legislative issues, meet other advocates, and share their unique stories with their legislators: https://everylifefoundation.org/rare-advocates/rare-disease-week/.
Were you unable to meet with your Members of Congress in Washington D.C. during Rare Disease Week? You can still participate by completing this action alert to have an automated email sent to your Members asking them to support the CMD & rare disease communities.
Rare Across America 2023 will take place August 7th-18th. During this time, rare disease advocates will have the opportunity to meet with their Members of Congress at the Member’s in-state, in-district office. Add the dates to your calendar and stay tuned for more information! To learn more about Rare Across America: https://everylifefoundation.org/rare-advocates/rare-across-america/.