Today, the Supreme Court decided to uphold the Affordable Care Act, allowing individuals who purchase health insurance on exchanges to continue receiving premium subsidies.
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.
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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.
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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.
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William Elder, Jr., a medical student with cystic fibrosis and long-time advocate for the CF community, has been invited to sit with First Lady Michelle Obama at tonight's State of the Union address. The White House invitation highlights the momentum and progress toward finding a cure for this devastating disease.
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Legislation introduced today will help more people with cystic fibrosis, and other rare diseases, participate in clinical trials without fear of losing important benefits or health coverage. The bill is sponsored by a bipartisan group of senators and legislators.
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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.
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Lack of insurance coverage for cystic fibrosis-related medications remains a top concern for people with CF and their families, a recent study found.
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Dr. Frank Accurso, director of cystic fibrosis clinical research at Children's Hospital Colorado and University of Colorado Denver, participated in a congressional roundtable discussion at National Jewish Health in Denver, Colorado.
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CF Foundation President and CEO Robert J. Beall, Ph.D. testified today before the House of Representatives' Energy and Commerce Committee at a hearing entitled, “21st Century Cures: Incorporating the Patient Perspective.”
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