Announcing the 2015 Rare Artist Award Recipients
Rare Giving
Introducing our new Rare Giving program read more

Congress Stands Behind OPEN after Rare Disease Community Takes Action

On Tuesday, May 12th, the rare disease community united to voice support for the OPEN ACT HR 971 (Orphan Product Extensions Now, Accelerating Cures & Treatments). Hundreds of phone calls and emails reached Capitol Hill throughout the day yesterday. On Wednesday, the Energy & Commerce (E&C) Committee released its updated version of the 21st Century Cures legislation, which included the OPEN ACT. The OPEN ACT provides an incentive for companies to repurpose drugs for rare disease indications, which could double the number of treatments available to rare disease patients. This is a significant victory for the rare disease advocacy community and a testament to what we can accomplish when we unite in Action. Thank you to all the advocates and organizations who took action and stood up for the OPEN ACT.  To read more>>>


The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases.

Currently, there are fewer than 400 approved treatments for 7000 rare diseases affecting more than 30 million Americans. read more


Italian Street Painting Marin, San Rafael CA, June 27-28, 2015

4th International RASopathies Symposium, Seattle WA, July 17-19, 2015

Annual Rare Disease Scientific Workshop, Washington DC, September 15th, 2015

Discovery on Target, Boston MA, September 21-24, 2015

NORD Rare Disease & Orphan Product Breakthrough Summit, Arlington VA, October 21-22, 2015

EveryLife Foundation Community Congress Meeting, Washington DC, November 4th, 2015

Rare Voice Awards Gala, Washington DC, November 4th, 2015

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