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Cystic Fibrosis In The News

Learn about the latest CF medical advances, treatments and pharmaceuticals.

Affordable Care Act supports families who have children with CF

Affordable Care Act supports families of children with special health care needs

Health and Human Services (HHS) Secretary Kathleen Sebelius today announced $4.9 million in Affordable Care Act funding to support Family-to-Family Health Information Centers, primarily non-profit organizations run by and for families with children with special health care needs.

“These centers provide the information that families need to make health care decisions that are right for their children,” Secretary Sebelius said. “Family-to-Family Health Information Centers are a good investment, and have a measurable and positive impact on families, and communities.”

Vertex brings hope

Parents who have kids with the deltaF508 strain of cystic fibrosis will soon be able to breathe a little easier.

Results from the clinical trials by Vertex Pharmaceutical’s have stocks climbing. The drug company climbed 55 percent to $58.12 at the close of the New York trading on May 7th, 2012.

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Kalydeco: A Homerun For CF

The FDA has approved KalydecoTM (ivacaftor), the first medicine to treat the underlying cause of cystic fibrosis (CF), a rare, genetic disease. Kalydeco is approved for people with CF ages 6 and older who have at least one copy of the G551D mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene. Approximatel 1,200 people in the United States, or 4% of those with CF, are believed to have this mutation.

Kalydeco was granted approval in approximately 3 months, making it one of the fastest FDA approvals ever and marking the second approval of a new medicine from Vertex in less than a year.

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