On December 8, The Cystic Fibrosis Foundation, in collaboration with the Congressional Cystic Fibrosis Caucus and its co-chairs, U.S. Reps. James McGovern (D-Mass.) and Tom Marino (R-Pa.), presented a congressional briefing on cystic fibrosis and precision medicine.
The European Commission has approved the cystic fibrosis drug Orkambi® for people with two copies of the F508del mutation ages 12 and older in the European Union.
A group of 62 enthusiastic teen advocates gathered in Washington, D.C. on June 25 to bring awareness of cystic fibrosis to Capitol Hill. During the 7th Annual Cystic Fibrosis Foundation Teen Advocacy Day, the teens highlighted the vital role that the CF Foundation plays in finding a cure for this life-threatening genetic disease.
On July 8, the White House honored 30-year-old Emily Kramer-Golinkoff as a “Champion of Change” for her role in advocating for the integration of precision medicine into the U.S. healthcare system.
The Cystic Fibrosis Foundation celebrates the FDA's approval today of the lumacaftor/ivacaftor combination drug (Orkambi™) as an important advance for the cystic fibrosis community. Orkambi targets the underlying cause of the disease in people with two copies of the most common CF gene mutation.
Today we received the exciting news that the U.S. Food and Drug Administration has approved Orkambi for people with cystic fibrosis ages 12 and older who have two copies of the F508del gene mutation, the most common CF mutation.
The Cystic Fibrosis Foundation is proud to announce our new National Advocacy Chairs, Melissa Shiffman from New York, NY, and Rebecca Schroeder from Coeur D'Alene, ID. Peter Barry, who, along with his wife Amy, has served as the Foundation's National Advocacy Chair for the last five years, announced the news at the Foundation's annual March on the Hill advocacy event on March 19.
Advocating on behalf of friends and family members with cystic fibrosis, more than 120 CF Foundation volunteers came together in the nation's capital to speak with their elected officials on behalf of friends and family members affected by the disease.
At a meeting hosted by the Cystic Fibrosis Foundation, private insurers, state Medicaid officials, care center providers, health experts and people with CF and their families came together to discuss innovative ways to continue improving high quality CF care on February 4.