EveryLife Foundation has created a petition on behalf of the rare disease community, asking for steady and robust federal agency leadership, federal biomedical research funding, and public health agency support.
Rare disease patients, caregivers, clinicians, researchers, and advocates are welcome to join in signing the petition to Congress in honor of Rare Disease Week on Capitol Hill 2025. On behalf of our nation’s rare disease community, the petition urges Congress to continue their support of steady and robust federal agency leadership, federal biomedical research funding, and public health agency resources. You can join the efforts by filling out the form to the right to sign the following petition.
Add your name today. And consider encouraging your family and friends to do so as well.
The Community’s Letter will be sent to all Members of Congress on Rare Disease Day, Friday, February 28. Your first and last name will appear on the petition sent to Congress. Individual names will not be shared publicly.
The petition content:
In honor of Rare Disease Day 2025, and on behalf of the more than 30 million Americans living with one or more rare diseases, the undersigned rare disease community members – together with nearly 1,000 advocates who participated in Rare Disease Week 2025 – ask you to encourage the President and the Secretary of Health and Human Services to Support Steady and Robust Federal Agency Leadership, Federal Biomedical Research Funding, and Public Health Agency Support.
Representing patients, caregivers, academic researchers, clinicians, and advocates, we appreciate Congress’ longstanding commitment to policies that ensure that no disease is too rare to deserve a timely diagnosis, access to healthcare and support services, and the opportunity for treatment. In partnership with you, that commitment and the life-altering progress our community has made in recent decades is threatened by the devastating and lasting impact recent executive actions are having on programs that are vital to our children and families.
Our rare disease community is:
- 30 million Americans strong.
- Comprised of 10,000 different rare diseases, all of which are chronic.
- Disproportionately affected by diseases that start in childhood (70% of the 10,000).
- Overwhelmingly without FDA-approved treatment options (fewer than 5% of the 10,000).
- Enduring staggering financial costs associated with a rare disease diagnosis (about 60% of the annual ~one trillion-dollar economic impact of rare disease is shouldered by families and communities).
Ten percent of the U.S. population is living with a rare disease, and we are driven by a sense of urgency dependent on our nation’s federal agencies’ services, expertise, resources, and funding.
For us, these agencies mean:
- Our children’s diagnosis can be found while there is still time to act;
- Insurance coverage exists for our complex medical needs and to enable us to remain in the workforce;
- Scientific experts in the U.S. are now leading global efforts to study our diseases;
- Companies are interested in turning scientific discoveries into potential, life-saving treatments; and
- Where a diagnosis once meant there was “nothing to do,” there is now much that can be done.
Our nation’s proud tradition of commitment to a strong public health and biomedical research ecosystem is working. Yet, there are opportunities to improve and build upon our current federal commitment to the vital role our biomedical ecosystem and federal health agencies play in protecting and advancing the health outcomes of all Americans. The desired change can only be achieved through a transparent, deliberative, and inclusive process.
The removal of key experts at Health and Human Services Agencies, including NIH, FDA, and CDC – paired with recent executive orders on federal funding and communications, compromises our nation‘s economic prosperity and threatens the foundation that enables hope. For children and adults with rare diseases, even a momentary pause in funding for these programs and agencies will have devastating, life-altering consequences.
We implore you to encourage the President and Secretary of Health and Human Services to Support Steady and Robust Federal Agency Leadership, Federal Biomedical Research Funding, and Public Health Agency Support.
Thank you for your support of the 30 million Americans who comprise our rare disease community.
Sincerely,
You can sign the petition here.