Cystic Fibrosis Foundation

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/develop cf drugs and therapies. Through the Foundation's efforts, the life expectancy of people with cf has more than doubled in the last 30 years, and research to (cont. On sch. O) find a cure is more promising than ever before. In 2020, the cf Foundation invested $258 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 andfunds a specialized cf clinical trials network of nearly 90 foundation-accredited care centers. As a result of this funding, in 2020 the cf drug development pipeline had 40 therapies indevelopment in addition to 16 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 2020, the Foundation provided more than $46 million of support for care centers and clinicians.the Foundation's patient registry collects information on the health status of more than 31,411 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.

Public and professional information and education - to broaden itsreach and to support its mission, the cf Foundation has programsdesigned to improve the knowledge of people with cf and theirfamilies, medical professionals and the general public regardingthe disease. In 2020, there were 364 publications and85 videos produced and made available to support education andawareness. Year-round, meetings and conferences provide updatesfor cf researchers, physicians and allied health professionals and opportunities for collaboration on future cf research projects and treatment/care efforts. In 2020, over 3,003,311 unique visitors came to the cf Foundation's website. New content on cff.org in 2020 included the launch of covid-19 care and advocacy sections and 103 blog posts.

Community services - the Foundation provides much-needed supportfor patients and their families as they manage the physical,emotional, and financial challenges of living with cf - fromsupporting specialized quality cf care, to providing informationand resources to help people with cf become effective partners intheir care to programs to help affect the isolation of living withthis disease. Approximately 31,411 people with cf were served in2020, including approximately 708 individuals who were newlydiagnosed.lack of adequate insurance coverage for cf medications has been aconsistent concern for those living with the disease (cont. On sch. O) and their families. Compass is a highly personalized service tailored to an individual's circumstances related to complex insurance, financial, legal, and other issues that can prevent access tomuch-needed cf therapies and care.in 2020, skilled case managers addressed more than 9,000 cases forpeople with cf, their families, and their provider network,including understanding and maximizing their insurance coverageand benefits, as well as getting help with other needs related todaily life with cf. Case managers also assisted with findingresources for issues related to life with cf that can affectaccess, including basic living and food expenses.today, more than half of all people with cf are age 18 or older.in 2020, approximately 2,200 people with cf and their familymembers joined virtual events designed by and for adults with cf, family, clinicians and researchers including breathecon, familycon and researchcon, that provide an opportunity for the cf community to connect, share, and learn from peers through open and honest dialogue.