Hayden's Hope

Monday, July 5, 2010

Congressional Causus on Rare & Neglected Diseases Formed

John Crowley, whose family’s story is portrayed in the feature film Extraordinary Measures starring Harrison Ford and Brendan Fraser, announced at the NORD Gala on May 18 that he and NORD President and CEO Peter L. Saltonstall filed papers that day to pave the way for establishment of a Congressional Caucus on Rare and Neglected Diseases.
The Caucus will provide a forum within the U.S. Congress to focus on issues and legislation related to rare diseases and orphan product development. Crowley and Saltonstall have been working with legislators and legislative aides to lay the groundwork for the Caucus.
To learn more, visit the National Organization of Rare Diseases (NORD) for more information at http://www.rarediseases.org/.

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