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Rare and neglected disease Caucus

Washington, D.C. — U.S. Reps. Leonard Lance (NJ-7) and Joe Crowley (NY-7) today announced the reestablishment of the Rare Disease Congressional Caucus for the 112th Congress. The lawmakers, who will serve as co-chairs of the Caucus, made their announcement at a Capitol Hill press conference with rare disease advocates on National Rare Disease Day 2011.
The goals of the Rare Disease Caucus are to bring Congressional attention to the nearly 7, 000 known rare diseases that currently have no approved therapies, ensure sufficient funding for research and orphan product development, explore ways to incentivize companies to create new drugs, biologics and humanitarian use devices, and provide an opportunity for Members of Congress, families, and advocacy groups to exchange ideas and policy concerns. Rare and neglected diseases afflict nearly 30 million Americans, approximately half of whom are children.

“The Rare Disease Congressional Caucus will provide an important forum in Washington for the exchange of ideas and information related to rare diseases, ” Lance said. “Congressman Joe Crowley and I are committed to working together in a bipartisan capacity with like-minded members, policy advocates and families across the nation to increase awareness and education of rare diseases.”
“Patients and families affected by a rare disease have been without a light at the end of the tunnel for far too long, ” said Rep. Crowley. “With one out of every 10 Americans suffering from a rare disease, it is absolutely critical that we do all we can to identify research opportunities, therapy options, and treatment. Together with Congressman Lance, I hope the Caucus will make strides in building awareness of rare diseases and identifying solutions to help the many Americans who are suffering.”
Joining the U.S. Representatives at the Caucus kick-off were rare diseases advocates including representatives from the National Organization for Rare Disorders (NORD) and New Jersey’s John Crowley, Chairman and CEO of Amicus Therapeutics, and the inspiration for the 2010 motion picture, “Extraordinary Measures.” The movie, which stars Harrison Ford and Brendan Fraser, chronicles John Crowley's family’s decade-long search to find a cure for a rare illness afflicting two of their children.

Rare brain disorder suspected in death.(Health)(Fatal illness: Doctors say Creutzfeldt-Jakob Disease may have killed Jerry Ray Collins.): An article from: The Register-Guard (Eugene, OR)
Book (The Register Guard)

Provinces and territories talk health care  — Canada NewsWire
Participating provincial and territorial health ministers discussed the significant challenges they face in providing new drug therapies to treat rare diseases.

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