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.
Join a special cystic fibrosis-specific course at this year's North American Cystic Fibrosis Conference intended to help clinicians improve their partnerships with patients and families.
Published on May 6, 2019
The Cystic Fibrosis Foundation will offer a special course at this year's North American Cystic Fibrosis Conference (NACFC), to improve care partnerships between CF care teams and people with CF and their families, based on the Partnership Enhancement Program (PEP).
Recent research has demonstrated the value of productive partnerships in CF care. However, these partnerships can fall short of their promise when people with CF and their families have trouble discussing complex and sensitive topics. In response, clinicians have asked for training to strengthen their existing communication skills to more effectively collaborate with their patient partners.
“As we partner with patients and families, using these communication skills/tools will elevate care.” -- CF Clinician and PEP participant
Developed by the CF Foundation and the Academy of Communication in Healthcare (ACH), PEP is an evidence-based, relationship-centered communication model that ACH initially developed, refined, and shared with numerous clinicians over the last two decades. Adapted to fit the unique nature of CF, the program helps clinicians expand their repertoire of communication skills, focusing on:
PEP is currently in its pilot phase, which will run through January 2020. Feedback from participants has been positive, and it is being used to further improve the program.
“The PEP program has taught me how to interact with patients on a different level and to be able to obtain trust and better outcomes in care.” -- CF Clinician and PEP participant
All 2019 pilot cohorts have been filled, but those interested can still learn PEP communication skills during the special course offered at NACFC. To participate, care teams can select “Partnership Enhancement Program (PEP): Building Relational Communication Skills” as part of their NACFC registration. The course will be offered on Wed., Oct. 30 from 8 a.m. to 3 p.m.
To learn more about PEP, request communication tools, or be added to the waiting list to host a workshop at your site, please email PEP@cff.org.
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