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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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.
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.
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.
Today, the Supreme Court decided to uphold the Affordable Care Act, allowing individuals who purchase health insurance on exchanges to continue receiving premium subsidies.
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.
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.
Cystic Fibrosis Foundation Vice President of Therapeutics Development Dr. Michael Boyle testified today at a hearing in front of the House Energy and Commerce Committee's Subcommittee on Health. He urged members to support H.R. 209, the Ensuring Access to Clinical Trials Act (EACT), which would make permanent a law enabling people to participate in clinical trials without the fear of losing critical benefits.
The CF Foundation applauds the Social Security Administration's updated eligibility requirements for disability benefits for people with respiratory diseases, including people with CF.
Feb. 25 will mark the tenth anniversary of the Cystic Fibrosis Foundation's signature advocacy event, March on the Hill. Nearly 75 advocates will come together in Washington, D.C. to meet with their elected officials on behalf of their loved ones, who are living with cystic fibrosis.