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Briefings
The Cystic Fibrosis Foundation maintains a strong presence in Washington, hosting events in Congress that highlight the Foundation’s successful drug development model and raise awareness about the disease.
Congressional Roundtable Discussion with NIH Director Francis Collins
On June 14, 2011, the Cystic Fibrosis Foundation and Vertex Pharmaceuticals, Inc. hosted a congressional roundtable discussion with National Institutes of Health Director Francis S. Collins, M.D., Ph.D., and members of the U.S. House of Representatives. The event focused on the NIH’s strategies for accelerating drug development for rare diseases and highlighted the CF Foundation’s drug development approach as a model for new NIH programs.
Speakers included Collins; Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation; Vertex Chairman and CEO Matthew W. Emmens; and Vertex Vice President and CF Franchise Lead Eric Olson, Ph.D. Reps. Edward Markey (D-MA), Brian Bilbray (R-CA), Tom Marino (R-PA) and Jim McGovern (D-MA) also participated in the discussion.
Learn more about the roundtable.
Leveraging Federal Investment to Speed the Development of Promising Therapies for Patients
On May 20, 2010, the Cystic Fibrosis Foundation, Faster Cures/The Center for Accelerating Medical Solutions, and Sens. Richard Shelby (R-AL) and Richard Durbin (R-IL) hosted a Senate briefing with Francis S. Collins, M.D., Ph.D., director of the National Institutes of Health (NIH). This event highlighted the Cystic Fibrosis Foundation’s success in bridging the gap between basic science discoveries and creating new therapies for patients.
“There is great progress being made in cystic fibrosis research,” said Collins, who noted how advancements in treatments and care have transformed cystic fibrosis from a pediatric illness to one in which nearly half of people with the disease are age 18 or older.
Collins said his goal is to take the promise of recent research developments in life-threatening diseases such as cystic fibrosis “and turn that into real results.”
Watch the Briefing
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Testimonies
In order to ensure that the voices of the CF community are heard in Washington, the Cystic Fibrosis Foundation submits testimony, comments and letters to Congress and federal agencies on health care policies vital to those with cystic fibrosis. Below, you will find statements that advocate for the CF community’s interests in three critical areas — federal investment in cystic fibrosis research and drug review, the development and review of CF treatments, and health care reform.
Federal Investment in CF Research and Drug Review:
Read testimony, provided by Cystic Fibrosis Foundation President and CEO Robert J. Beall, Ph.D., regarding:
The Development and Review of CF Treatments:
Read testimony, provided by CF Foundation President and CEO Robert J. Beall, Ph.D, regarding:
Health Care Reform:
Read correspondence sent to congressional leaders by CF Foundation President and CEO Robert J. Beall, Ph.D., and Vice President of Government Affairs Mary Dwight regarding attempts to repeal the health care reform law on January 6, 2011.
Read comments, submitted to the Department of Health and Human Services by CF Foundation President and CEO Robert J. Beall, Ph.D., advocating for the needs of cystic fibrosis patients as the health care reform law is implemented. In particular, the comments discuss:
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