Ask Your Representative to Co-Sponsor the OPEN ACT to Repurpose Drugs for Rare Disease Patients
Take action to support the Orphan Product Extensions Now, Accelerating Cures and Treatments (OPEN ACT; HR 1223). 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 and Genetic Alliance are among the more than 220 patient organizations that support this bipartisan legislation.