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Bilirakis Joins Bipartisan Colleagues With a Rare Disease Advocate Running Across America

March 18, 2015

Washington, D.C. – Yesterday, Congressman Gus Bilirakis (R-FL) joined Rare Disease Caucus Co-Chair Congressman Lance (R-NJ) and Congressman Garamendi (D-CA) at a bipartisan press conference with Noah Coughlan of Vacaville, California. Mr. Coughlan is currently running across America to raise awareness about rare diseases. Congressman Bilirakis and Mr. Coughlan expressed support for the House Energy and Commerce Committee's 21st Century Cures Initiative to provide better cures and treatments more quickly for individuals living with rare and chronic conditions.

"Noah's advocacy on behalf of rare diseases patients is truly remarkable. Thirty million Americans suffer from a rare disease, and if we come together, we can get them better cures, faster," said Congressman Bilirakis. "Noah is a great American, and a true inspiration. I believe the 21st Century Cures Initiative will result in meaningful, impactful legislation that will change lives."

"By marking Noah's incredible accomplishment we highlight yet another advocate who has given their time, energy, talent and voice to our effort. We need everyone to join us in our ongoing fight for better, faster cures and to bring attention to the struggle of millions battling rare disease," said Congressman Lance.

"Families across America are suffering from rare diseases. We can and must find cures through accelerated research and development. Noah's remarkable feat reminds us that Americans can accomplish great things. I am proud to call Noah my constituent and to lend my voice to this effort to find 21st Century Cures," said Congressman Garamendi.

"30 Million Americans [are] affected by a Rare Disease or Disorder. These are not just statistics or numbers. These are real people with real challenges. It is imperative that we, as a nation, and as a people, address their plight. I stand in support of this bipartisan effort to make their lives better," said Noah Coughlan.

Rare diseases are defined as those that affect fewer than 200,000 individuals in the United States. A total of 30 million Americans have one of the 7,000 known rare diseases. Many of these diseases have debilitating consequences for their victims.

You can view Representative Bilirakis' complete remarks here. Bilirakis has five provisions included in the 21st Century Cures draft legislation, including H.R. 971, the Orphan Product Extensions Now Accelerating Cures and Treatments (OPEN ACT), which is supported by 132 rare disease advocacy groups.

For more information on 21st Century Cures, to https://energycommerce.house.gov/cures.

Noah is just the third person to run across America three times. He is also the youngest.