Sponsors Type
Foundation
Country
United States
Grant Types
Fellowship/Scholarship/Dissertation Workshop/Conference
 Contact Info
Phone
202-697-RARE (7273)
Email
info@everylifefoundation.org
Address
1012 14th Street, NW, Suite 500, Washington, DC 20005
Last modified on 2025-04-10 10:41:45
Description
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. - The national economic burden of 379 rare diseases reached nearly $1 trillion in the U.S. in 2019. - In the United States, a disease is defined as rare when it affects fewer than 200,000 people. - More than thirty million Americans (one in 10) live with one or more rare diseases. - 93% – 95% of the more than 10,000 known rare diseases have no U.S. Food and Drug Administration-approved therapies. - Rare disease patients wait an average of 6.3 years after symptoms present before receiving a confirmed diagnosis, having received several incorrect diagnoses during that time. - The U.S. Food and Drug Administration process for approval of a rare disease drug (referred to as “orphan”) can take an average of 15 years.
Sponsor Relationship

  EveryLife Foundation for Rare Diseases is not a part of any other sponsors in our database.


  No sponsor in our database are part of EveryLife Foundation for Rare Diseases.

Most Recent Grants from This Sponsors
The EveryLife Foundation for Rare Diseases believes it is critical for policymakers and...
Added on 2023-06-26T20:32:39Z
Living with a rare disease means managing unique challenges, including frequent doctor visits,...
Added on 2023-06-22T21:31:07Z
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