Included in 21st Century Cures & Reintroduced in the 114th CongressOpenActLogoColorCMYKOL

Support for the OPEN ACT (Orphan Product Extensions Now, Accelerating Cures & Treatments) on Capitol Hill is growing. The bill provides incentives for companies to repurpose or “rarepurpose” existing treatments for rare disease indications. The legislation was included in the draft 21st Century Cures discussion bill released by the Energy & Commerce Committee. This is a major positive development as Chairman Upton (R-MI) has expressed interest in having the legislation voted on by Memorial Day.


In addition, Reps. Bilirakis (R-FL), Butterfield (D-NC), and McCaul (R-TX) have co-sponsored the stand-alone version of the OPEN ACT, which was officially introduced on Friday, February 13th as HR 971. The bipartisan bill introduction was in concert with strong support from the patient community, with 135 organizations signing-on.


The EveryLife Foundation is still looking for supporting patient organizations to support. Please contact Max Bronstein – to sign-on today.