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March 4, 2016
Bilirakis Blog

Rare Disease Week gave us the opportunity to raise awareness and encourage research to find cures and treatments for rare diseases. Rare diseases are not so rare in our nation.

Some RARE facts:

  • 30 million people are living with a rare disease in the U.S. That’s 1 in 10 Americans.
  • Rare diseases often affect our nation’s youngest, 30% of children with rare diseases will not live to see their 5th birthday.
  • 80% of rare diseases are passed genetically.

I am proud to have played a big role in the House efforts to combat rare diseases. The Energy and Commerce Committee’s 21st Century Cures Act, which passed the House last year, included my OPEN Act to help patients with rare diseases. My bill will incentivize drug makers and innovators to “repurpose” major market drugs for life-threatening rare diseases. This will open the door to the development of hundreds of new approved treatments for individuals with rare diseases, as well as a new surge in biotechnology jobs and investments.

This week, I joined patients, advocates, families, and organizations to spread the word about the OPEN Act and encourage work to help those living with rare disease.

Here are some highlights from this Rare week:

I had the opportunity to speak with the EveryLife foundation about our efforts to combat rare disease. I am proud to work with this organization and many others to help those living with a rare condition.

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On Wednesday, I took over the Energy and Commerce Committee’s Instagram to help spread the word about #RareDiseaseWeek. My OPEN Act was included in the Committee’s 21st Century Cures Act – we need #CuresNow for millions of patients and families.   

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Fellow Floridian, Candace, has been an important advocate in the fight to combat rare diseases. Candace and I stopped by the Energy & Commerce press studio to film a short video on how the 21st Century Cures Act, my OPEN Act, and provisions within that bill, will help those with rare diseases.

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It was wonderful to see Lisa Schill (left) with whom I continue work to raise national awareness for rare conditions. Lisa’s son Max (right) has been a big advocate for my OPEN Act and the 21st Century Cures legislation. Learn more about Max here.

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On Thursday, I had the privilege to speak during the Rare Disease Caucus briefing. I am so proud to see so many members working together to address this important issue.


Learn more about the work I am doing to combat rare diseases here and learn about the inspiration behind my OPEN Act here.