OPEN ACT & United Rare Disease Day
Please call Congress TODAY and ask them to include the OPEN ACT, HR 971 (Orphan Product Extensions Now, Accelerating Cures & Treatments) in the 21st Century Cures Legislation. The OPEN ACT has the potential to double the number of approved rare disease treatments available to patients. To date, 155 patient organizations support the OPEN ACT, including NORD, Global Genes, and the Genetic Alliance. By standing together we can ensure Congress helps rare disease patients.
Click here to take action: Stand up for Rare Disease Patients TODAY
Please share this alert widely and join our event on Facebook.
Why the OPEN ACT is important: Despite advances made possible by the Orphan Drug Act, 95 percent of the 7,000 rare diseases still have no approved treatments. Biopharmaceutical companies are not repurposing major market therapies to treat rare diseases because there is no incentive for them to do so.
The OPEN ACT is bipartisan legislation that creates an economic incentive for companies to repurpose drugs for rare diseases. The OPEN ACT could:
• Bring hundreds of treatments to rare disease patients
• Enable access to safe, effective and affordable treatments
• Spur biotech investment, innovation, and foster clinical research at universities while creating new jobs
Learn more at: http://curetheprocess.org/incentivize/
Max G. Bronstein, MPP
Senior Director, Public & Government Relations
EVERYLIFE FOUNDATION FOR RARE DISEASES
Accelerating Biotech Innovation for Rare Disease Treatments
Take Action Now – ask your representative to co-sponsor the OPEN ACT HR 971 to help bring treatments to rare disease patients!