Learn about cystic fibrosis, a genetic lung disorder that affects the 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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
Our goal is to educate policy makers about the needs of people with cystic fibrosis so that they make smart decisions about CF-related research, treatment, and access to care.
We recognize the value of tapping into the expertise that only people with CF and their families have. We invite you to share insights to help improve and develop programs and services that support the daily lives of people with CF.
Our mission is to find a cure for cystic fibrosis and improve the quality of life for those living with the disease. We can't do it alone. Help us add tomorrows by giving today.
In addition to working for a cure, the CF Foundation supports programs and policies to improve the lives of people with CF. Help us by raising awareness of CF, participating in a fundraising event, or volunteering with your local chapter.
Access to antimicrobial tools can aid researchers in the discovery of new anti-infective treatments for cystic fibrosis.
Pulmonary infections, due to infectious agents such as bacteria, viruses, and fungi, are a common occurrence in people with cystic fibrosis. While effective treatments are available for some of these common pathogens, various drug-resistant strains of bacteria have developed that make treatment difficult.
Certain research tools, such as clinical isolates of Pseudomonas aeruginosa, Burkholderia cepacia complex, and other bacterial strains are available for CF research purposes and can aid scientists in the discovery of new anti-infective therapies.
For information on in vivo murine models to study anti-microbial agents in CF, contact:
Tracey Bonfield, Ph.D. D (ABMLI)
Assistant Professor, Department of Pediatrics
Case Western Reserve University
Clinical isolates of P. aeruginosa (bacterial strains isolated from the lungs of people with CF) are recommended for research areas including new drug discovery, biofilm research, virulence studies, and drug-resistance studies.
CF isolates of Staphylococcus aureus (including MRSA), Stenotrophomonas maltophilia, and Achromobacter xylosoxidans also are available.
For more information, contact:
Rafael E. Hernandez, M.D., Ph.D.
Seattle Children's Research InstituteCFisolatescore@seattlechildrens.orgCF Isolates Core
B. cepacia complex and other non-fermenting bacterial isolates can be requested from the CF Foundation-supported B. cepacia Research Laboratory and Repository at the University of Michigan, Ann Arbor.
John J. LiPuma, M.D.
Professor, Pediatrics and Epidemiology
University of Michigan
Tel: 734-615-5909Fax: 734-764-4279
Nontuberculous mycobacteria (NTM) isolates can be requested through the CF Foundation-supported Research Development Program Culture, Biorepository, and Coordinating Core at National Jewish Health, Denver. The core provides isolates to researchers on request and after committee review. Requests can be made by species or other characteristics, and many isolates have associated meta-data including whole genome sequencing, phylogenomic analysis, and antimicrobial susceptibility information available.
Currently, this collection has over 1,000 NTM isolates, including longitudinal isolates collected through the CF Foundation-supported diagnostic (PREDICT: NCT02073409) and treatment (PATIENCE: NCT02419989) trials.
Rachael Rodger, MPH
Clinical Research Coordinator
National Jewish Health Advanced Diagnostic Laboratory
Colorado Cystic Fibrosis Research & Development Program
Advances in gene sequencing technology have enabled sequencing of two common CF bacterial genomes: Pseudomonas aeruginosa and Burkholderia cepacia.
Understanding the importance of this resource for the research community, the Cystic Fibrosis Foundation supports the construction of annotated databases that serve as a central portal through which researchers may access high-quality genome-associated information about the bacteria and its potential drug/vaccine targets.
View the Pseudomonas Genome Database and the Burkholderia Genome Database.
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