The EveryLife Foundation for Rare Diseases Marks 15th Annual Rare Disease Week on Capitol Hill
Expanded Agenda Creates More Space for Connection, Storytelling, and Advocacy
WASHINGTON, Feb. 18, 2026 /PRNewswire/ -- For the 15th consecutive year, the EveryLife Foundation for Rare Diseases (EveryLife Foundation) will welcome advocates from 49 states, the District of Columbia, and Puerto Rico to Rare Disease Week on Capitol Hill, February 24 through February 26, 2026, in Washington, D.C. A free event, Rare Disease Week convenes patients, caregivers, advocates, and policymakers to elevate the rare disease patient voice and advance policies that improve the lives of millions of Americans living with rare conditions.
As part of the EveryLife Foundation's ongoing efforts to continually enhance the event — and informed directly by attendee feedback — Rare Disease Week 2026 will introduce several important updates designed to strengthen community connection, expand storytelling opportunities, and create a more intentional advocacy experience.
Michael Pearlmutter, CEO of the EveryLife Foundation, is excited by the changes to this year's event: "Each year, we ask our community how we can make Rare Disease Week better. Attendees told us they wanted more time to connect with one another, additional opportunities to refine their personal rare disease stories, and a little more breathing room in the agenda. Rare Disease Week 2026 reflects those priorities."
New for 2026, the agenda will now include an additional half-day of programming on Tuesday, February 24. This added time will feature dedicated sessions led by community leaders, including our 2025 RareVoice Award winners, focused on helping advocates craft, refine, and amplify their personal rare disease stories. Tuesday's programming will conclude with a Welcome Reception and dedicated meet-up opportunities for YARR participants, RDLA Advisory Committee members, and Community Scholarship recipients, creating intentional space for networking and community building.
The Legislative Conference will take place on Wednesday, February 25 with a refreshed structure that provides attendees with more opportunities to connect and plan with advocates from their home states. The conference will also feature a gallery showcasing the work of the 2025 Rare Artists, highlighting the intersection of art, advocacy, and lived experience within the rare disease community.
On Thursday, February 26, the Senate Special Committee on Aging will hold a hearing at 9:30 a.m. ET to examine the FDA's role in rare disease therapy development. Then at 12:30 p.m. ET attendees will have the opportunity to attend the Rare Disease Congressional Caucus Briefing before meeting with their Members of Congress on Capitol Hill. The EveryLife Foundation's Rare Disease Week activities end with a closing reception.
The EveryLife Foundation will also be presenting the RareVoice Lifetime Achievement Award at this year's Rare Disease Week during Wednesday's Legislative Conference. This award is presented to individuals who have worked tirelessly over their lifetime and/or career to uplift the rare disease community and whose work has improved the rare disease ecosystem. Frank J. Sasinowski, MS, MPH, JD will be this year's recipient. Sasinowski has helped secure FDA approval for hundreds of new drugs and has been involved in more than 50% of all the drugs FDA approved by way of the accelerated approval pathway (outside of cancer). He is also a former EveryLife Foundation Board Chair, ending his most recent term at the end of 2025. Lifetime Achievement awardees receive an "Abbey" statuette commissioned specially for the RareVoice Awards.
In 2025, more than 800 advocates from 49 states and representing over 184 patient organizations attended over 363 meetings with Members of Congress and/or staffers during Rare Disease Week. Shannon von Felden, Vice President of Advocacy at the EveryLife Foundation and head of RDLA, believes that the accessibility of the event helps the organization to see continued growth year after year: "There is no charge for advocates to participate in Rare Disease Week, and advocacy training is provided for all who attend, reinforcing the commitment of RDLA and the EveryLife Foundation to ensuring access and inclusion for the entire rare disease community. Additionally, the EveryLife Foundation provides travel reimbursements for advocates who may need assistance through the organization's Rare Giving program. In 2025, the Rare Giving program provided more than $220,000 in travel reimbursements to 209 advocates."
To learn more about the 15th Annual Rare Disease Week and all of the associated events, visit EveryLifeFoundation.org.
About the EveryLife Foundation for Rare Diseases:
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community.
To learn more, visit EveryLifeFoundation.org and follow us on Facebook, X, Instagram, and LinkedIn.
SOURCE EVERYLIFE FOUNDATION FOR RARE DISEASES
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