EveryLife Foundation Hosts Significant Advocacy Efforts During 15th Annual Rare Disease Week in Washington, D.C.
The EveryLife Foundation for Rare Diseases organized its 15th Annual Rare Disease Week on Capitol Hill from February 24-26, 2026. This significant event brought together a diverse group of stakeholders, including hundreds of patients, caregivers, advocates, researchers, and policymakers from across the United States, representing 49 states, the District of Columbia, and Puerto Rico. The primary goal was to advocate for bipartisan policy solutions that address the unique challenges faced by the rare disease community.
The week commenced with educational programming and important policy discussions, including participation in the FDA's virtual Rare Disease Day event and the Health and Human Services (HHS) release of critical guidance related to rare diseases. The culmination of the week was marked by a Rare Disease Congressional Caucus Briefing and a hearing held by the U.S. Senate Special Committee on Aging. At these gatherings, lawmakers had the opportunity to hear directly from advocates about the real-life challenges encountered by rare disease patients and their families, thereby identifying legislative opportunities aligned with the community's needs.
Among the various concerns presented, advocates outlined several key priorities:
1. The Credit for Caring Act, which proposes a federal tax credit aimed at alleviating the financial burden of out-of-pocket expenses for family caregivers who provide complex and long-term care for individuals with rare diseases.
2. The Genomic Answers for Children’s Health Act, intended to enhance Medicaid access to genomic sequencing. This would significantly reduce the diagnostic timeline for children suspected of having rare diseases.
3. Increased funding for the Rare Diseases Innovation Hub in FY27 to maintain essential regulatory infrastructure and collaboration in the research community.
4. Urgent congressional action to ensure that regulatory flexibilities for rare disease therapies are implemented as intended by Congress.
The importance of these legislative efforts was emphasized during the Rare Disease Congressional Caucus Briefing, featuring remarks from prominent figures such as Senator Amy Klobuchar and a video message from Representative Gus Bilirakis. The panel included notable advocates and experts from organizations focused on rare diseases. They highlighted the necessity for ongoing collaboration between Congress, federal agencies, and the rare disease community to continue driving innovation forward.
An integral part of the proceedings was the testimony from Annie Kennedy, Chief Mission Officer of the EveryLife Foundation, who underscored the urgency of addressing systemic issues faced by this community. She urged lawmakers to promote timely diagnosis through various means, such as newborn screenings and access to genetic testing, and to fund sustained biomedical research.
The advocacy efforts of Rare Disease Week were further amplified during a hearing held by the Senate Special Committee on Aging. This session focused on the healthcare and caregiving challenges families face while managing complex medical conditions typical of rare diseases. Expert testimonies reiterated the need for Congressional recognition of these challenges, stressing the urgency of addressing the unmet needs within this population.
As Michael Pearlmutter, CEO of the EveryLife Foundation, emphasized, “Rare Disease Week continues to demonstrate the power of coordinated advocacy in our community.” He noted that the convergence of patients, caregivers, researchers, and policymakers is vital in creating a system that effectively recognizes and addresses the unique realities associated with rare diseases.
While this year marked the 15th anniversary of Rare Disease Week, the EveryLife Foundation made it clear that the push for policy change and support does not end with the conclusion of the event. They intend to maintain engagement with Congress, federal agencies, and various coalition partners throughout 2026, aiming to secure federal funding, advance supportive legislation, and promote regulatory structures conducive to innovation.
Next steps involve continued dialogues with Senate Committee members and leaders of the Rare Disease Caucus to seize opportunities for further action following the hearings. The Foundation also plans to persistently advocate for funding of the Rare Disease Innovation Hub and bipartisan support for the Genomic Answers for Children's Health Act moving forward. Stakeholders can stay informed of any developments by visiting the EveryLife Foundation's website.
For further information on the 15th Annual Rare Disease Week and associated events, please visit EveryLifeFoundation.org.
About the EveryLife Foundation for Rare Diseases: The EveryLife Foundation is a non-profit, nonpartisan organization dedicated to improving health outcomes for individuals affected by rare diseases. It advocates for policy change driven by evidence and is committed to fostering a collaborative and informed rare disease community.
The week commenced with educational programming and important policy discussions, including participation in the FDA's virtual Rare Disease Day event and the Health and Human Services (HHS) release of critical guidance related to rare diseases. The culmination of the week was marked by a Rare Disease Congressional Caucus Briefing and a hearing held by the U.S. Senate Special Committee on Aging. At these gatherings, lawmakers had the opportunity to hear directly from advocates about the real-life challenges encountered by rare disease patients and their families, thereby identifying legislative opportunities aligned with the community's needs.
Among the various concerns presented, advocates outlined several key priorities:
1. The Credit for Caring Act, which proposes a federal tax credit aimed at alleviating the financial burden of out-of-pocket expenses for family caregivers who provide complex and long-term care for individuals with rare diseases.
2. The Genomic Answers for Children’s Health Act, intended to enhance Medicaid access to genomic sequencing. This would significantly reduce the diagnostic timeline for children suspected of having rare diseases.
3. Increased funding for the Rare Diseases Innovation Hub in FY27 to maintain essential regulatory infrastructure and collaboration in the research community.
4. Urgent congressional action to ensure that regulatory flexibilities for rare disease therapies are implemented as intended by Congress.
The importance of these legislative efforts was emphasized during the Rare Disease Congressional Caucus Briefing, featuring remarks from prominent figures such as Senator Amy Klobuchar and a video message from Representative Gus Bilirakis. The panel included notable advocates and experts from organizations focused on rare diseases. They highlighted the necessity for ongoing collaboration between Congress, federal agencies, and the rare disease community to continue driving innovation forward.
An integral part of the proceedings was the testimony from Annie Kennedy, Chief Mission Officer of the EveryLife Foundation, who underscored the urgency of addressing systemic issues faced by this community. She urged lawmakers to promote timely diagnosis through various means, such as newborn screenings and access to genetic testing, and to fund sustained biomedical research.
The advocacy efforts of Rare Disease Week were further amplified during a hearing held by the Senate Special Committee on Aging. This session focused on the healthcare and caregiving challenges families face while managing complex medical conditions typical of rare diseases. Expert testimonies reiterated the need for Congressional recognition of these challenges, stressing the urgency of addressing the unmet needs within this population.
As Michael Pearlmutter, CEO of the EveryLife Foundation, emphasized, “Rare Disease Week continues to demonstrate the power of coordinated advocacy in our community.” He noted that the convergence of patients, caregivers, researchers, and policymakers is vital in creating a system that effectively recognizes and addresses the unique realities associated with rare diseases.
While this year marked the 15th anniversary of Rare Disease Week, the EveryLife Foundation made it clear that the push for policy change and support does not end with the conclusion of the event. They intend to maintain engagement with Congress, federal agencies, and various coalition partners throughout 2026, aiming to secure federal funding, advance supportive legislation, and promote regulatory structures conducive to innovation.
Next steps involve continued dialogues with Senate Committee members and leaders of the Rare Disease Caucus to seize opportunities for further action following the hearings. The Foundation also plans to persistently advocate for funding of the Rare Disease Innovation Hub and bipartisan support for the Genomic Answers for Children's Health Act moving forward. Stakeholders can stay informed of any developments by visiting the EveryLife Foundation's website.
For further information on the 15th Annual Rare Disease Week and associated events, please visit EveryLifeFoundation.org.
About the EveryLife Foundation for Rare Diseases: The EveryLife Foundation is a non-profit, nonpartisan organization dedicated to improving health outcomes for individuals affected by rare diseases. It advocates for policy change driven by evidence and is committed to fostering a collaborative and informed rare disease community.
Topics Policy & Public Interest）
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