Video Presentations from the 1st Rare Disease Congressional Caucus Briefing

The National Organization for Rare Disorders (NORD)
and Rare Disease Legislative Advocates (RDLA), in coordination with
Rare Disease Caucus Co-Chairs Representatives Leonard Lance and Joe Crowley hosted a briefing on
“Rare Diseases and Orphan Products”

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February 28, 2011, Washington DC: An Extraordinary Rare Disease Day Invitation

RDLA hosted a Cocktail Reception and Movie Screening of Extraordinary Measures in Washington, DC to kick off Rare Disease Day Week.  Special Guests included John Crowley, the father who inspired the movie and former Congress Member Dick Gephardt (D-MO) and now Chairman of the Council for American Medical Innovation.

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Rare & Neglected Disease Congressional Caucus Planning Meeting

Monday, November 15, 2010, FasterCures, Washington, DC

Special Guest John Crowley will help facilitate the meeting
Crowley’s leadership helped secure the Caucus co-chairs. He has two children with Pompe, a neuromuscular disease and was the inspiration for the film “Extraordinary Measures.”

The goal of the planning session is to receive input from the whole rare and neglected disease community and build consensus on a broad and inclusive federal legislative agenda advancing multiple initiatives to accelerate the development of new treatments for rare and neglected diseases.

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Senate H.E.L.P. Committee Hearing: Treating Rare and Neglected Pediatric Diseases

Senate Committee on Health, Education, Labor, and Pensions (HELP),  Full Committee Hearing – Treating Rare and Neglected Pediatric Diseases: Promoting the Development of New Treatments and Cures

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Senate Appropriations Committee Hearing: FDA’s Review Process for Products to Treat Rare Diseases and Neglected Tropical Diseases