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.
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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.
On Feb. 24 and 25, the Cystic Fibrosis Foundation presented three Legislative Champion Awards to Senator Ron Wyden (D-Ore.), Senator Orrin Hatch (R-Utah) and Congressman Lloyd Doggett (D-Texas) for their ardent support of the CF community and their sponsorship of S. 139/H.R. 209, the Ensuring Access to Clinical Trials Act.
On Feb. 25, members of CF Foundation leadership and advocates from the CF community joined President Obama, National Institutes of Health (NIH) Director Francis S. Collins, Food and Drug Administration (FDA) Commissioner Robert M. Califf, White House staff and other stakeholders at the Precision Medicine Initiative Summit (PMI), hosted by the White House.
The Cystic Fibrosis Foundation's tenth annual March on the Hill saw more than 80 volunteer advocates from 34 states convene in Washington, D.C. to speak with their members of Congress about cystic fibrosis and ways that elected officials can support the CF community and our search for a cure.
Senate Caucus will work with House Caucus to raise awareness, advance policies and support research
Today, the Cystic Fibrosis Foundation announced plans to improve lung transplantation for people with CF at an Organ Summit, hosted by the White House. The event focused on new and innovative ways to improve outcomes for individuals waiting for organ transplants and to improve support for living donors.
As part of the Cystic Fibrosis Foundation's eighth annual Teen Advocacy Day, more than 75 teens from 35 states met with elected officials in Washington, D.C., on June 23 and advocated on behalf of their loved ones with cystic fibrosis.