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2025 Rare Disease Week Recap

Kelly Berger & Avery Roberts

"The Tenacity of Hope" Docu-Film's Director, Levi Gershkowitz, and his fellow panelists during the Rare Reels panel discussion.

February 24-26, 2025, fearless CMD Advocates took part in Rare Disease Week on Capitol Hill 2025, hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases).


The multi-day event kicked off with the Rare Reels Screening and Reception that featured Cure CMD’s docu-film, in partnership with Living in the Light, The Tenacity of Hope. This unique event celebrated impactful stories from the rare disease community. Cure CMD is honored our film was selected, and thank you to the film’s director, Levi Gershkowitz, for providing insight during the event’s panel on showcasing what it means to live with CMD.


A conference room filled with attendees seated at tables, listening to retired NFL legend, Josh Andrews on stage with large screens displaying a football-related presentation slide.

The week continued with the full-day Legislative Conference, which was filled with networking and learning about the current and future landscapes of rare disease public policy. Advocates were briefed on the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build relationships with Members of Congress and staff. Retired NFL legends and first-time advocates, Josh Andrews and Art Still, both of whom live with rare diseases themselves, joined advocates in DC.


Finally, the most anticipated part of the week, Hill Day, had arrived. With a new administration at the helm, the U.S. federal policy environment is rapidly evolving and sharing our stories is important now, more than ever. Advocates geared up to attend meetings with their Members of Congress and their staff to share their stories and present the proposed legislation that impacts the rare disease community. They urged Members of Congress to support the rare disease community by:


The remainder of Rare Disease Week included a Pride in Rare Meetup, Young Adult Rare Representatives (YARR) Meetup, the Rare Disease Congressional Caucus Briefing, and this year’s Rare Artist Reception. The FDA-NIH Rare Disease Day 2025 will be rescheduled to occur in the coming months.


The current and rapidly evolving U.S. federal policy environment has raised a number of questions from our community about the impact on those living with CMD. In response, Lani Knutson, Cure CMD’s Advocacy Team Lead, released the following statement as the Cure CMD Advocacy Team, along with our advocacy partners, continue to actively monitor developments and provide pertinent updates.


As the EveryLife Foundation instills in us, this time of year around Rare Disease Week and Rare Disease Day our community is reminded that we are: Together. United. Strong. Powerful. Keep an eye out for more opportunities to advocate in the coming days and consider attending next year’s Rare Disease Week on Capitol Hill. Your voice truly matters!


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