Advocates Raise Awareness and Speak Out on Vital CF Issues Across the Country

In 2014, the Cystic Fibrosis Foundation and advocates across the country played a vital role in shaping issues important to the CF community. CF advocates attended more than 500 meetings with elected officials and sent them more than 60,000 messages advocating on behalf of people with CF.

Dec. 22, 2014 | 2 min read

On Capitol Hill, advocates worked to support the Newborn Screening Saves Lives Reauthorization Act and increased funding for the NIH and FDA, both of which have been signed into law by President Obama. The Foundation also hosted a Congressional briefing to discuss the benefits of the CF care model and how its innovative strategies for drug development can serve as an example for other rare diseases, and advocated for greater focus on the patient perspective in drug development.

CF advocates across the country, including volunteers, care center teams, and chapter staff spearheaded efforts in 31 states. Key initiatives included educating state decision-makers about the needs of people with CF, collaborating with CF care center providers to advocate for the CF community, and ensuring access to quality, specialized treatments for people with CF.

In 2015, the CF Foundation will continue advocating on behalf of the CF community to ensure all people with the disease have the opportunity to lead full, productive lives.

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About the CF Foundation | Public Policy | Advocacy
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