A RARE Week

Statement

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.

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