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.
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The Cystic Fibrosis Foundation hosted a Congressional briefing on February 11 to discuss the benefits of the Foundation's model of specialized, coordinated care and its innovative strategies for drug development, and how they can serve as an example for other rare, chronic diseases.
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.
After more than six years of dedicated service as co-chair of the Congressional Cystic Fibrosis Caucus, Rep. Edward Markey (D-MA) has stepped down from the post as he assumes new responsibilities in the U.S. Senate. Rep. Jim McGovern (D-MA) will replace Markey, joining Rep. Tom Marino (R-PA) as co-chair of the Caucus.
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.
A new law that allows patients with rare diseases to participate in clinical trials without losing eligibility for public health care benefits went into effect yesterday. The bill, known as the “Improving Access to Clinical Trials Act” (IACT), was championed by the Cystic Fibrosis Foundation and signed into law in October 2010.
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.
Lack of insurance coverage for cystic fibrosis-related medications remains a top concern for people with CF and their families, a recent study found.