Advocates Gather for 15th Annual Rare Disease Week at Capitol Hill

The EveryLife Foundation for Rare Diseases Celebrates 15 Years of Advocacy at Capitol Hill

For the 15th year in a row, the EveryLife Foundation for Rare Diseases will host Rare Disease Week on Capitol Hill from February 24 to 26, 2026, in Washington, D.C. This significant event will bring together advocates from 49 states, the District of Columbia, and Puerto Rico. The goal is to elevate the voices of rare disease patients and catalyze positive policy changes that enhance the lives of millions living with rare conditions.

The framework of Rare Disease Week has evolved over the years, shaped largely by feedback from previous participants. This year, several key updates aim to foster a more connected community atmosphere, enhance storytelling opportunities, and create a design that encourages effective advocacy.

Michael Pearlmutter, the CEO of EveryLife Foundation, is enthusiastic about these enhancements, stating, "Every year, we gather input from our community on how to improve Rare Disease Week. Attendees expressed a desire for more time to connect, additional resources to refine their unique stories, and a wider scope in the agenda. The adjustments made for 2026 directly reflect these priorities."

The schedule this year introduces an additional half-day of programming on Tuesday, February 24. This session will feature community leaders, including 2025's RareVoice Award winners, leading discussions aimed at helping advocates articulate and amplify their rare disease experiences. The day will come to an end with a Welcome Reception and networking opportunities, particularly focused on engaging Youth Advocates for Rare Diseases (YARR) participants and members of the Rare Disease Legislative Advocates (RDLA).

The Legislative Conference, taking place on Wednesday, February 25, is structured to facilitate deeper connections among attendees, allowing them to strategize with fellow advocates from their respective states. This year's conference will also showcase a gallery featuring the work of 2025's Rare Artists, creating a bridge between art, advocacy, and lived experiences within the rare disease community.

On Thursday, February 26, a hearing will be conducted by the Senate Special Committee on Aging at 9:30 a.m. ET to evaluate the FDA's role in the development of therapies for rare diseases. Following this, participants will engage in the Rare Disease Congressional Caucus Briefing at 12:30 p.m. ET, followed by meetings with members of Congress on Capitol Hill. The week will conclude with a closing reception organized by the EveryLife Foundation.

A highlight of this year's activities will be the presentation of the RareVoice Lifetime Achievement Award during the Legislative Conference. This award honors individuals who have made outstanding contributions to the rare disease community, aiming to uplift the ecosystem surrounding rare diseases. This year's recipient, Frank J. Sasinowski, MS, MPH, JD, has a remarkable track record, having influenced the FDA's approval process for numerous new drugs, notably through the accelerated approval pathway—a significant achievement outside the cancer field.

In the previous year, Rare Disease Week attracted over 800 advocates from various states, representing more than 184 patient organizations. They collectively engaged in over 363 meetings with congressional representatives. Shannon von Felden, Vice President of Advocacy at the EveryLife Foundation, emphasizes the importance of accessibility, stating, "Participation is free for all advocates, with comprehensive advocacy training provided to ensure inclusion within the rare disease community. Our Rare Giving program further supports attendees, offering travel reimbursements to those who qualify. Last year, this initiative disbursed over $220,000 to assist advocates."

As Rare Disease Week continues to grow, the EveryLife Foundation aims to drive vital change through evidence-based policies and community activism. For additional information regarding the 15th Annual Rare Disease Week and the associated programs, please visit EveryLifeFoundation.org.

About the EveryLife Foundation for Rare Diseases

Founded as a 501(c)(3) nonprofit organization, the EveryLife Foundation is dedicated to improving the health outcomes of rare disease patients by advancing evidence-based policy, leading regulatory research, and empowering community advocacy. To stay updated on their endeavors, follow them on social media or visit their website.