Cystic Fibrosis Foundation
Cystic Fibrosis Foundation
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More about this organization
Mission
The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care.
About
Medical programs - Since 1955, the Cystic Fibrosis Foundation has been dedicated to curing and controlling cystic fibrosis (CF). The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis, a life-threatening genetic disease that affects more than 30,000 people in the United States, and 70,000 worldwide. The foundation accomplishes its mission by funding life-saving research to discover and develop effective therapies for people with CF. The CF Foundation has funded hundreds of millions of dollars of research costs to help discover and develop CF drugs and therapies. Through the foundations efforts, the life expectancy of people with CF has more than doubled in the last 30 years, and research to find a cure is more promising than ever before. In 2018, the CF Foundation invested $189 million into research and care. The CF Foundation has attracted significant industry involvement in the fight against CF by funding contracted drug discovery and development research conducted by biotechnology companies. It also provides matching awards to CF drug developers for CF research and funds a specialized CF clinical trials network of nearly 90 foundation-accredited care centers. As a result of this funding, in 2018 the CF drug development pipeline had 26 therapies in development in addition to 10 FDA approved treatments that address complications like infections and a potential cure. The treatment and care protocols developed by the CF Foundation are helping tens of thousands of people with the disease live longer, healthier lives. To support its mission, the foundation funds and accredits a nationwide network of more than 130 care centers. The care center network provides the best care for people with CF and has been recognized by the National Institutes of Health as a model of care for a chronic disease. In 2018, the foundation provided more than $47 million of support for care centers and clinicians. The foundation's patient registry collects information on the health status of more than 30,700 people with CF, providing caregivers and researchers critical information to help identify new health trends and effective treatments and improve the quality of CF care. The patient registry is an internationally recognized model for other nonprofit health organizations, including CF advocacy groups.