In Honor of Rare Disease Week 2025,
Petition Amplifies Capitol Hill Ask
WASHINGTON, March 5,
2025 /PRNewswire/ -- More than 10,000 rare disease
advocates signed a petition led by the EveryLife Foundation for
Rare Diseases (EveryLife Foundation) urging Members of Congress 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. Made up of rare disease patients, caregivers, academic
researchers, clinicians, patient advocacy groups, and industry
partners, the petition was delivered to every member of Congress on
February 28 in honor of Rare Disease
Day.
For the 30 million Americans living with one or more of the
10,000 identified rare diseases, steady federal support for robust
biomedical research and stability at national public health
agencies are essential to advancing lifesaving research and public
health initiatives. The EveryLife Foundation is deeply concerned at
the devastating and lasting impact recent executive orders will
have on programs that are vital to thousands of rare diseases, and
the community as a whole.
Annie Kennedy, Chief Policy,
Advocacy, and Patient Engagement Officer at the EveryLife
Foundation emphasized the importance of bipartisan, bicameral
support of our healthcare ecosystem: "A strong commitment to our
federal health agencies is a commitment to the millions of
Americans and families affected by rare diseases who rely on
federal leadership to drive progress. And a strong commitment to
funding research spurs innovative collaborations, builds
infrastructure to attract private investment, and helps ensure our
nation remains a global leader in working to cure diseases that
were once deemed too rare or complex to treat. For children and
adults with rare diseases, even a momentary pause in funding for
these programs or agencies has devastating, life-altering
consequences. In our community, time is a commodity and resources
are precious. Funding innovation does not just ensure
progress, it provides hope."
As outlined in the petition, preserving our nation's federal
agencies' services, expertise, resources, and funding means:
- A 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.
The petition began during the EveryLife Foundation's 14th Annual
Rare Disease Week event held in Washington, D.C., from February 24 – 26. Nearly 1,000 advocates gathered
from 49 states attending 300+ meetings with members in both the
House and the Senate. If you would like to add your name to the
petition, click here.
About the EveryLife Foundation for Rare Diseases:
The EveryLife Foundation for Rare Diseases is a 501(c)(3)
nonprofit, nonpartisan organization dedicated to empowering the
rare disease patient community to advocate for impactful,
science-driven legislation and policy that advances the equitable
development of and access to lifesaving diagnoses, treatments and
cures.
To learn more, visit EveryLifeFoundation.org and follow us on
Facebook, X, Instagram, and LinkedIn.
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SOURCE EVERYLIFE FOUNDATION FOR RARE DISEASES
