The Patient Registry is an invaluable tool for researchers conducting observational studies about people with CF in the U.S. About 50,000 individuals have been followed in the Registry since its inception in 1986; many of them have been included for over 20 years.
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The Success with Therapies Research Consortium helps the clinical study of interventions so people with cystic fibrosis can improve the consistency of their day-to-day management of their CF to optimize health outcomes and quality of life.
If your child has cystic fibrosis, chances are you have some concerns about school fitness activities like physical education classes or school sports teams. Even though some people with CF have trouble breathing and tire easily, exercise can be especially important.
Revised Law Includes Designated Funding for Rare Diseases
Cystic Fibrosis Foundation Drug Development Model Spawns More Than 30 Promising Therapies
Today, the Cystic Fibrosis Foundation announced a new award of up to $2 million to Eloxx Pharmaceuticals Inc. to support the global Phase 2 clinical program of ELX-02, a potential therapy to treat people with cystic fibrosis who have nonsense mutations.