Ask Your Representative to Co-Sponsor the OPEN ACT to Repurpose Drugs for Rare Disease Patients

Take action to support the OPEN ACT - Orphan Product Extensions Now, Accelerating Cures & Treatments (H.R. 1223 / S. 1509).  The OPEN ACT could bring hundreds of safe, effective, and affordable medicines to rare disease patients within the next several years by incentivizing drug makers to repurpose therapies for the treatment of life-threatening rare diseases and pediatric cancers. The OPEN ACT could allow for insurance reimbursement of otherwise off-label treatments or procedures, and reduce the cost of orphan therapies. EveryLife Foundation, the National Organization for Rare Disorders (NORD), Global Genes, Genetic Alliance as well as more than 220 patient organizations support this bipartisan legislation.

For further information on the OPEN ACT, click here.

Please take a minute to contact your representative and share this action alert on social media! All you have to do is edit the letter below to advocate for your disease community, enter your name, address, and click submit.