The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community.

 

Industries
Nonprofit
Rare Disease
Healthcare



Office Locations
1012 14th Street, NW, Suite 500 Washington, DC 20005
Contact Information
Will Nolan
Chief Marketing & Communications Officer
[email protected]
phone 202-697-RARE (7273)
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Latest

Jun 17, 2025, 13:47 ET The EveryLife Foundation for Rare Diseases Provides Funds to Advocates & Patient Advocacy Groups

The EveryLife Foundation for Rare Diseases (EveryLife Foundation) is proud to announce that applications are open for the 2026 Rare Giving program, a ...

May 14, 2025, 12:50 ET "Hope for some and gaps for many" in Therapy Pipeline for Pediatric Onset Rare Diseases

New research in Journal of Managed Care + Specialty Pharmacy (JMCP) provides insights into the future landscape of treatments for rare diseases that...

Mar 05, 2025, 13:53 ET More Than 10,000 Rare Disease Community Advocates Sign Petition Asking Members of Congress to Support Research and Public Health Agencies

More than 10,000 rare disease advocates signed a petition led by the EveryLife Foundation for Rare Diseases (EveryLife Foundation) urging Members of...

Feb 19, 2025, 11:48 ET NFL Legends Join Advocates from 49 States for 14th Annual Rare Disease Week on Capitol Hill

The EveryLife Foundation for Rare Diseases (EveryLife Foundation) will welcome advocates from 49 states and Puerto Rico to Rare Disease Week on...

Jul 17, 2024, 16:16 ET EveryLife Statement on the Creation of FDA Rare Disease Innovation Hub

The EveryLife Foundation for Rare Diseases commends the Food and Drug Administration (FDA) on today's announcement of its intention to create a Rare...

May 16, 2024, 10:39 ET EveryLife Foundation Announces Scientific Workshop on 'Ultra-Rare' Diseases

The EveryLife Foundation for Rare Diseases is excited to announce its Scientific Workshop slated for May 21, 2024, in Washington, D.C., with both...

Mar 28, 2024, 09:00 ET EveryLife Foundation for Rare Diseases Welcomes Michael Pearlmutter as CEO

Building on the legacy of 15 years as a growing and impactful foundation serving the rare disease community, the EveryLife Foundation for Rare...

Oct 19, 2023, 08:30 ET EveryLife Foundation for Rare Diseases Announces Search for CEO to Lead New Era of Growth

EveryLife Foundation for Rare Diseases, a leading nonprofit organization dedicated to closing the innovation gap for rare diseases and ensuring...

May 21, 2015, 12:19 ET Advocates Cheer Senate Leaders for Introducing Bipartisan Bill to Increase Number of Rare Disease Treatments

The EveryLife Foundation for Rare Diseases applauded Sens. Orrin Hatch (R-UT) and Amy Klobuchar (D-MN) today for introducing the Orphan Product...

Feb 24, 2015, 09:00 ET Rare Disease Patients Advocates Storm Capitol Hill

Over 200 patient advocates are in Washington D.C. as part of a global week of advocacy dedicated to raising awareness about rare disease issues. The...

Nov 24, 2014, 08:00 ET OPEN Act Introduced to Repurpose Drugs for Rare Diseases

Last week, Representatives Gus Bilirakis (R-FL) and G.K. Butterfield (D-NC) took a bold bipartisan step on behalf of patients with rare diseases by...

Feb 27, 2014, 09:45 ET Elementary Star Jonny Lee Miller heads to Washington DC TODAY to help give rare disease patients a voice on Capitol Hill

Jonny Lee Miller, who stars as Sherlock Holmes in the CBS hit TV show Elementary, is headed to Capitol Hill on Thursday, February 27, to speak at the ...

Jun 25, 2013, 01:26 ET Rare Disease White Paper Open for Public Comment

The EveryLife Foundation for Rare Diseases assembled a working group drawn from industry and patient organizations to develop a white paper to...

Jul 10, 2012, 12:07 ET Obama Signs FDA User Fee Legislation Bringing Hope to Rare Disease Patients

Yesterday President Obama signed into law The Food and Drug Administration Safety and Innovation Act (FDASIA), S. 3187, bipartisan legislation that...

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