Program areas at 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 find a cure is more promising than ever before. In 2019, the cf Foundation invested $201 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 2019 the cf drug development pipeline had 29 therapies in development in addition to 15 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 2019, the Foundation provided more than $41 million of support for care centers and clinicians. The Foundation's patient registry collects information on the health status of more than 31,199 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 its reach and to support its mission, the cf Foundation has programs designed to improve the knowledge of people with cf and their families, medical professionals and the general public regarding the disease. In 2019, there were 27 publications and 39 videos produced and made available to support education and awareness. Year-round, meetings and conferences provide updates for cf researchers, physicians and allied health professionals and opportunities for collaboration on future cf research projects and treatment/care efforts. In 2019, over 3,063,346 unique visitors came to the cf Foundation's website. New content on cff.org in 2019 included the launch of 11 new sections and 90 blog posts.
Community services - the Foundation provides much-needed support for patients and their families as they manage the physical, emotional, and financial challenges of living with cf - from supporting specialized quality cf care, to providing information and resources to help people with cf become effective partners in their care to programs to help affect the isolation of living with this disease. Approximately 31,199 people with cf were served in 2019, including approximately 766 individuals who were newly diagnosed. Lack of adequate insurance coverage for cf medications has been a consistent concern for those living with the disease 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 to much-needed cf therapies and care. In 2019, skilled case managers addressed more than 6,000 cases for people with cf, their families, and their provider network, including understanding and maximizing their insurance coverage and benefits, as well as getting help with other needs related to daily life with cf. Case managers also assisted with finding resources for issues related to life with cf that can affect access, including basic living and food expenses. Today, more than half of all people with cf are age 18 or older. In 2019, approximately 1,500 people with cf and their family members 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.