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NIH Director Francis Collins to Address 3,000 Cystic Fibrosis Experts at International Conference in Minneapolis

Historic Time in Treatment of Cystic Fibrosis as Promising Drugs Reach Phase 3 Trials  

October 8, 2009   

(Bethesda, Md.) —Francis S. Collins, M.D., Ph.D., the new NIH director who led an international effort to map the human genome and co-discovered the gene responsible for cystic fibrosis, will address more than 3,000 leading scientists and clinicians from around the world at the 23rd annual North American Cystic Fibrosis Conference (NACFC).

Held in Minneapolis from Oct. 15-17, 2009, the conference comes at a pivotal point in the history of cystic fibrosis, a fatal genetic disease. For the first time, drugs that aim to treat the basic genetic defect in CF have reached Phase 3 clinical trials. These include VX-770ataluren (formerly PTC124) and denufosol. Past NACFC conferences have fueled this progress, and helped life expectancy for people with CF to double over the past 25 years.
Key topics include:

  • Improving health outcomes using cutting-edge quality improvement tools
  • No longer just a pediatric disease: care and treatment strategies for adults living with CF 
  • Latest information on emerging therapies for CF 
  • Coping with barriers to health care coverage for people with CF

Cystic fibrosis affects about 30,000 children and adults in the United States and causes life-threatening lung infections and premature death. Ten million people are unknowing carriers of the faulty CF gene. Fifty years ago, most children with CF died before reaching elementary school. Today, because of Cystic Fibrosis Foundation-supported drug research and care, people with CF are living into their 30s, 40s and beyond.

The North American Cystic Fibrosis Conference, the largest international gathering of leading cystic fibrosis research scientists and clinicians.

Thurs., Oct.15 – Sat., Oct.17, 2009, at the Minneapolis Convention Center, Minneapolis, Minnesota.


Thursday, Oct. 15, 4:20 p.m. – Francis S. Collins, M.D., Ph.D., the National Institutes of Health,  and Steven M. Rowe, M.D., MSPH, The University of Alabama at Birmingham: “Two Decades of CFTR Research: From Gene Discovery to Therapeutic Target.”

Friday, Oct. 16, 8:45 a.m. – Michael W. Konstan, M.D., Rainbow Babies & Children's Hospital, Cleveland, Ohio and Lisa Saiman, M.D., M.P.H., Columbia University College of Physicians & Surgeons, New York, New York: “Inflammation & Infection: Update on the Pipeline.”

Sat., Oct. 17, 8:30 a.m. – Bonnie W. Ramsey, M.D., Children’s Hospital & Regional Medical Center, Seattle, Washington, George Z. Retsch-Bogart, M.D., University of North Carolina, Chapel Hill, North Carolina and Claire E. Wainwright, M.D., MBBS, Royal Children's Hospital, Brisbane, Queensland, Australia: “Early Airway Infection in Young Children with CF – What is the Optimal Therapy?”


  • Plenary speakers and other leading CF research scientists and clinicians
  • Robert J. Beall, Ph.D., President and CEO, Cystic Fibrosis Foundation
  • Preston W. Campbell, M.D., Executive Vice President for Medical Affairs, Cystic Fibrosis Foundation
  • Patient interviews available upon request

About the Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for cystic fibrosis. The Foundation funds more CF research than any other organization and nearly every CF drug available today was made possible because of Foundation support. Based in Bethesda, Md., the Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. 

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The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.