Join us for A Rare Affair on January 11th, 2015
Learn more about this event and buy tickets at www.RareAffair.org
Enter Your Art in the 2014 Rare Artist Contest
Rare Giving
Introducing our new Rare Giving program read more

Bilirakis OPENs the Door to Accelerating Cures & Treatments


Representative Gus Bilirakis, member of the House Energy and Commerce Subcommittee on Health, today introduced H.R. 5750, the Orphan Product Extensions Now Accelerating Cures & Treatments (OPEN ACT). The OPEN ACT will incentivize drug makers and innovators to “repurpose” major market drugs for life-threatening rare diseases and pediatric cancers, which opens the door to the development of hundreds of safe, effective, and affordable treatments for rare disease patients. “There are over 7,000 rare diseases, impacting 30 million Americans – that is nearly one in ten people. Over 95% of these diseases have no treatments, because each rare disease impacts a small number of patients. My bill will leverage the free market to incentivize drugs to be repurposed to treat rare diseases,” Bilirakis said. “The OPEN ACT has the potential to result in hundreds of new drugs and treatments for individuals with rare diseases, as well as a new surge in biotechnology jobs and investments. This bill can help millions of people by ensuring medications are safe and effective for rare conditions, and can be reimbursed through insurance coverage.”  To read more>>>

About


The EveryLife Foundation for Rare Diseases is 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.

Currently, there are fewer than 400 approved treatments for 7000 rare diseases affecting more than 30 million Americans. read more

Events


Workshop on the Role of Investigational New Drugs in Patient Care, Washington DC, December 10, 2014

A Rare Affair for Rare Diseases, San Francisco CA, January 11, 2015

Rare Disease Week on Capitol Hill, Washington DC, February 23-26, 2015

Rare Disease Day at NIH, Bethesda MD, February 27, 2015

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Supported Programs