Over 10,000 Advocates Unite in Petition for Rare Disease Research Support

In 2025, in a robust demonstration of solidarity, over 10,000 advocates from the rare disease community came together to sign a significant petition initiated by the EveryLife Foundation for Rare Diseases. This initiative urged Congress members to actively support critical funding and leadership within federal health and public agencies. This collective action was timed to coincide with Rare Disease Week, celebrated from February 24 to 26, when nearly 1,000 advocates gathered in Washington, D.C., for more than 300 discussions with lawmakers.

The EveryLife Foundation represents not just the rare disease patients, but also their caregivers, academic researchers, clinicians, advocacy organizations, and collaborators from various industry sectors. This breadth of representation highlights the urgency and importance of the petition's message: sustained federal support is essential for continuing the fight against rare diseases, which affect around 30 million Americans.

Advocates, like Annie Kennedy, Chief Policy, Advocacy, and Patient Engagement Officer of the EveryLife Foundation, stressed the profound need for stability and robust funding in biomedical research and public health initiatives. She pointed out that this commitment directly influences the lives of millions affected by rare diseases, forging paths to innovative treatments and scientific breakthroughs. Kennedy emphasized, “Funding innovation does not just ensure progress; it provides hope.”

The petition, delivered to every member of Congress on February 28, calls for a commitment to preserving the resources, expertise, and leadership of federal health agencies crucial to finding effective treatments and cures. The implications of the petition are far-reaching: securing funding ensures that timely diagnoses can be made, complex medical needs are met, and groundbreaking research continues to showcase the U.S. as a leader in this area.

Supporting the rare disease community means standing against recent executive orders that threaten to destabilize these vital programs and initiatives. Advocates argue that without consistent support for biomedical research and public health infrastructure, the future of rare disease treatment could become dire. The statement from the EveryLife Foundation underscores that investment in research fuels collaboration, attracts private investments, and ultimately leads to the discovery of crucial therapies for conditions previously deemed too rare or complex to address.

The community has been adamant about the need for bipartisan cooperation in tackling these challenges. During Rare Disease Week 2025, advocates engaged with legislators, reinforcing the message that supporting federal health initiatives is not merely a policy choice, but a fundamental necessity for millions of families struggling with rare diseases.

The petition's success depended on collective voices sharing personal stories, advocating for their loved ones, and reminding lawmakers of their responsibility to promote public health and wellbeing. In her remarks, Kennedy highlighted how critical these efforts are: “For children and adults with rare diseases, even a momentary pause in funding has devastating, life-altering consequences.”

As advocates continue to rally, they are calling on individuals who share this commitment to add their names to the petition, reinforcing the message that every voice matters in the advocacy for health equality and access to potentially life-saving research and treatments.

For further engagement and to lend your support, interested individuals can visit the EveryLife Foundation’s website, where they can learn more about the initiatives in progress and how they may contribute to this vital cause. Together, united in purpose, the rare disease community remains hopeful that with the right support and resources, enduring change is not only possible but essential.