Membership Spotlight: The Everylife Foundation for Rare Diseases


By: Theo Smith, Associate, Marketing & Communications  

An estimated one in 10 Americans suffer from a rare disease, making it a public health crisis. On average, rare disease patients wait six years after symptoms present before receiving a proper diagnosis. Ninety-three percent of the 7,000 known rare diseases still have no FDA-approved therapy. 

The Everylife Foundation for Rare Diseases believes that by activating the patient voice, they can change public policy and save lives. The Foundation is a nonprofit, nonpartisan organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy.   

While the Everylife Foundation does not speak for patients directly, it provides training, education, resources, and opportunities to make the patient voice heard. These efforts include advocacy and educational programs like: the Rare Disease Scientific Workshopthe Rare Disease Legislative Advocates (RDLA)Young Adult Representatives of RDLACommunity CongressRare Hub, and many more.   

Rare Disease Week on Capitol Hill, the Foundation’s signature event, will be held March 1 – 4, 2021. Watch the 2020 wrap-up video to get a sense of the energy and excitement of this advocacy week. 

Photo: Rare disease advocates gathered for Rare Disease Week on Capitol Hill 2020, hosted by the RDLA, a program of the EveryLife Foundation for Rare Diseases. 

 The EveryLife Foundation is a proud National Health Council (NHC) member. The mission of the NHC, to provide a united voice for the 160 million people living with chronic diseases and disabilities and their family caregivers, aligns with the Foundations work to advocate for the patient voice and improve the care of patients with rare disease through public policy changes.  

To learn more about the Everylife Foundation for Rare Diseases, go to their website. 

If you would like more information on NHC membership, please contact Bob Scott.