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CF Advocates Advance Research and Preserve Access to Care in 2011

December 22, 2011

In 2011, Cystic Fibrosis Foundation advocates worked to advance cystic fibrosis research and help ensure access to treatment and care for people with the disease.

Below are just a few of the successes of the Foundation’s advocacy efforts in 2011.

We raised awareness in Washington of the importance of research and drug development for people with cystic fibrosis and other rare diseases.

  • The CF Foundation and CF advocates helped push for a new National Institutes of Health (NIH) center dedicated to translating basic research discoveries into new treatments and cures.

  • The CF Foundation hosted a Congressional briefing with National Institutes of Health Director Francis S. Collins, M.D., Ph.D., and members of the U.S. House of Representatives to discuss how to apply the Cystic Fibrosis Foundation’s successful drug development model to new NIH programs.

  • The CF Foundation helped win increased funding for the Food and Drug Administration (FDA), which will help ensure new CF therapies are reviewed swiftly and effectively.

We continued to protect CF patients’ access to care centers and vital therapies throughout the country.

  • CF Advocates helped restore funding for 20 state-level CF care programs and worked to protect state Medicaid programs, ensuring access to health benefits and coverage for thousands of people with CF.

  • The CF Foundation articulated the need for specialized and affordable care for people with CF.

We made sure the voices of people with CF were heard in Congress and state capitols around the country.

  • Volunteers held over 300 meetings with members of Congress in Washington, D.C. to discuss issues affecting people with CF.

  • This fall, CF advocates sent nearly 32,000 emails and more than 500 “retweets” of the CF Foundation’s Twitter messages to Congress’ Deficit Reduction Supercommittee in just two weeks, conveying the importance of Medicaid coverage for CF care.
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