Introducing our new Rare Giving program read more
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.
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.
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