EveryLife Foundation for Rare Diseases Emboldens Advocates and Urges Congress to Prioritize Patients During 15th Annual Rare Disease Week on Capitol Hill

WASHINGTON, March 10, 2026 /PRNewswire/ -- From February 24-26, 2026, the EveryLife Foundation for Rare Diseases (EveryLife Foundation) convened hundreds of patients, caregivers, advocates, researchers, and policymakers from 49 states, the District of Columbia, and Puerto Rico for the 15^th annual Rare Disease Week on Capitol Hill. Rare disease community members spoke to their Members of Congress to advance bipartisan policy solutions aimed at accelerating diagnoses, supporting families, and strengthening rare disease research and regulatory innovation.

After starting the week with the FDA's virtual Rare Disease Day event and the Health and Human Services (HHS) release of the Plausible Mechanism Framework Draft Guidance, advocates participated in educational programming and high-level policy discussions culminating in a Rare Disease Congressional Caucus Briefing and a U.S. Senate Special Committee on Aging hearing, where lawmakers examined the real-world challenges facing rare disease patients and caregivers and highlighted legislative opportunities aligned with the community's priorities. Advocates then took to the Hill to meet with Members of Congress from their state to share their stories and encourage support of key policy priorities.

Advocate priorities included:

• The Credit for Caring Act, which would provide a federal tax credit to help offset out-of-pocket expenses incurred by family caregivers, many of whom provide complex, lifelong care for individuals living with rare diseases.
• The Genomic Answers for Children's Health Act, designed to expand Medicaid access to genomic sequencing testing to shorten the diagnostic journey for children with suspected rare diseases.
• Robust FY27 funding for the Rare Diseases Innovation Hub to sustain critical regulatory infrastructure and collaboration.
• Congressional action to support the implementation of regulatory flexibilities for rare disease therapies as Congress intended.  

These legislative priorities were reinforced during the Rare Disease Congressional Caucus Briefing. The Briefing included in-person remarks by Senator Amy Klobuchar and a video message by Representative Gus Bilirakis, two of the Co-Chairs of the Caucus. The panel included Ron Bartek, Co-Founder of the Friedrich's Ataxia Research Alliance; rare disease advocates, Michael Beacham, Allison Walker Beacham, and Brittany Clayborne, PsyD; and Jamie Sullivan, Senior Vice President of Policy & Advocacy for the EveryLife Foundation. The hearing was moderated by James Valentine, Director at Hyman, Phelps & McNamara, P.C., and a member of the EveryLife Foundation Board of Directors. Speakers emphasized the need for sustained collaboration between Congress, federal agencies, and the rare disease community to maintain momentum in innovation.

Jamie also shared how Congress can address systemic issues represented in the speaker's stories, including advancing timely diagnosis through newborn screening and access to genetic testing, continuing to fund biomedical research, and engaging with the FDA to ensure all the tools that Congress provided to the FDA for accelerating rare disease therapy innovation are used consistently.

The week's advocacy efforts were further amplified during a Senate Special Committee on Aging hearing, which spotlighted the caregiving and healthcare challenges faced by families managing complex medical conditions, including rare diseases. With a room full of rare disease patients and families in attendance, the hearing included remarks from Senators and expert witnesses, including the EveryLife Foundation's Chief Mission Officer, Annie Kennedy. The expert witnesses continually noted the importance of Congressional actions recognizing the urgency and unmet need in rare disease and authorizing FDA's use of regulatory flexibility as a tailored approach to rare disease therapy development and review. As Annie pointed out in her testimony, "Congressional action is needed to ensure that this generation of patients will benefit from our existing rare disease treatment pipeline."

By aligning grassroots' advocacy with formal congressional briefings and committee proceedings, Rare Disease Week translated patient stories into policy dialogue at the highest levels of government.

"Rare Disease Week continues to show the power of coordinated advocacy in our community," said Michael Pearlmutter, Chief Executive Officer of the EveryLife Foundation for Rare Diseases. "When patients, caregivers, researchers, and policymakers come together, we move closer to a system that recognizes the unique realities of rare diseases and delivers meaningful solutions for the entire community."

While this year marked the 15^th anniversary of Rare Disease Week, the EveryLife Foundation emphasized that advocacy does not end when advocates leave Washington. The policy priorities advanced during the week will continue to guide engagement with Congress, federal agencies, and coalition partners throughout 2026.

The EveryLife Foundation will continue working with bipartisan champions in both chambers to advance legislation, secure federal funding, and promote regulatory frameworks that facilitate innovation while ensuring patients have timely access to safe and effective therapies. Next steps include further discussions with Senate Committee members and the leadership of the Rare Disease Caucus to identify opportunities for further action after the hearing, continuing to urge Congress to fund the Rare Disease Innovation Hub, and supporting efforts to find bipartisan champions of the Genomic Answers for Children's Health Act. As always, the EveryLife Foundation will keep the community updated on any new developments.

To learn more about the 15^th 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