WASHINGTON—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 Friday, Feb. 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 said it 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.
"Funding innovation does not just ensure progress, it provides hope." - Annie Kennedy
"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," Annie Kennedy, chief policy, advocacy and patient engagement officer at the EveryLife Foundation emphasized the importance of bipartisan, bicameral support of our health care ecosystem. "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 the 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 Feb. 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.