Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
In a joint international research project, scientists are examining cystic fibrosis transmembrane conductance regulator (CFTR) mutations to determine which ones cause CF and to provide additional information associated with these mutations. Their findings are available in an online searchable database.
Cystic fibrosis is a genetic disease that occurs when people inherit two copies of the defective cystic fibrosis transmembrane conductance regulator (CFTR) gene -- one copy from each parent. The severity of the disease can vary greatly depending on the combination of mutations that someone inherits. Modifier genes that are also inherited and environmental factors play a role.
With Cystic Fibrosis Foundation support, an international team of researchers created an online database that provides information about different mutations and symptoms associated with each mutation. This online resource is designed for people with CF and their families, researchers, health professionals, and the general public.
The database can be found on the website CFTR2, which stands for the Clinical and Functional Translation of CFTR. This growing database has information from nearly 90,000 people with CF, collected by CF patient registries and care centers around the world.
The CFTR2 website describes the characteristics of 374 of the most common CFTR mutations, representing 97 percent of mutations in the CF population worldwide. Users can search by entering one or two mutations.
Because not all changes in the CFTR gene cause the symptoms associated with CF, the search results will note whether the mutations cause disease and provide a general picture of the lung function levels, sweat chloride levels, and pancreatic function associated with individual mutations or combination of mutations. These health indicators are then compared to the statistics for the rest of the patients included in the database.
The search results cannot predict how mutations will affect a particular individual because they do not include information about other factors that might influence the course of someone's disease. Site organizers recommend that users consult their doctor or genetic counselor for additional information about any one person.
The CFTR2 project is a collaboration between the Cystic Fibrosis Foundation; Johns Hopkins University, Baltimore; the Hospital for Sick Children, Toronto; and the Cystic Fibrosis Centre, Verona, Italy.
For more information, watch the webcast "CFTR2: Information About CF Mutations."
For people with CF who have not yet been tested to determine their CF mutations, or who have been tested previously but still have one or more unknown mutations, the CF Foundation provides the Mutation Analysis Program (MAP), a free and confidential genetic testing program for people with a confirmed diagnosis of CF.
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