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.
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.
As the Senate considers adding repeal of the Affordable Care Act's (ACA) individual mandate to its tax reform package, a group of 16 nonpartisan patient and consumer groups issued a statement on last week's Congressional Budget Office (CBO) report.