HONORED FOR OFFERING LEGISLATION TO ACCELERATE NEW DRUGS AND TREATMENTS THAT BENEFIT THOSE WITH RARE DISORDERS

WASHINGTON, MAY 16, 2012 – The National Organization for Rare Disorders (NORD) last night presented its National Health Leadership Award to Rep. Cliff Stearns (R-FL) during its Partners in Progress Celebration.  Stearns was recognized for offering H.R. 4132, the Faster Access to Specialized Treatments (FAST) Act.  Said Peter Saltonstall, NORD President and CEO, “We thank you for your presence and your support.  Even more, we thank you for the work you do every day to relive suffering, improve quality of life, and seek new and better diagnostics and treatments for the 30 million Americans with rare diseases.”

Stearns stated, “I’m grateful for this support of the FAST Act, which will ensure that the voices of those with rare diseases will be heard by the Food and Drug Administration (FDAThere are about 7,000 rare diseases and only 250 have any FDA approved treatment.  I've met with families with children suffering from rare diseases with no options available.  One father talked about his son having no medical options, but there was an experimental drug trial in Europe, but not here.  This bill will give the FDA another tool to accelerate drug approval for the rare disease community and ensure America's leadership in medical research.”During consideration by the House Energy and Commerce Committee of H.R. 5651, the FDA Reform Act, the provisions of the FAST Act were incorporated into H.R. 5651, which was then approved.

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