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.
CF care centers have worked hard to improve health outcomes. A new initiative seeks to improve the quality of our experiences at care centers.
June 17, 2016
Gene Editing: Q&A With Bill Skach
4 Tips for Telling Your CF Story to Legislators
More than a year ago, the Cystic Fibrosis Foundation made available to all CF care centers “The Patient and Family Experience of Care Survey.” This survey allows people with CF and parents of children with CF to provide feedback to participating care centers, which can use this information to improve the quality of care.
Nowadays we receive a lot of surveys when we get home from the hospital or a clinic visit. One type of hospital survey is called the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey. It is linked to the funding the hospital gets with each hospitalization. Another type of survey is called the Press Ganey survey. It assesses the quality of services provided by different areas of each hospital. It basically grades a particular area of the hospital or clinic to see how well they are doing. Neither is aimed specifically at the care that people with CF receive. Every time I complete one, I find myself wondering what happened to it and if they took any of my suggestions. I stopped filling them out for a while because it seemed futile.
Well, that is not the case with the Experience of Care Survey. This survey is intended to improve the quality of care that care centers deliver to people with CF and is a way for people with CF, as well as parents and caregivers, to provide information anonymously to participating care centers. It is different from all of the other surveys in that we know that our feedback will be shared with, and reviewed by, our care teams. The hope is that we will see results in the form of a better experience during clinic visits instead seeing our feedback disappearing into thin air.
As patients, this survey gives us the opportunity to effect change (in 20 minutes or less!).
We get to provide feedback on our most recent visit, timeliness of care, infection control, our care team, health care resources and our overall health. So, basically, it covers our medical appointments from beginning to end. I took the survey for adults with CF, which I received in the mail, but it is also available to take online and on the phone -- and there are separate versions for parents of kids with CF and for Spanish speakers. If you haven't been asked to complete it yet, ask your care team about it.
Care centers can access the survey results in real time. The responses will provide the insights for care teams to learn their strengths and weaknesses in the eyes of the people they serve.
When I took the survey, I initially had concerns about confidentiality but was assured the surveys are completely confidential. (A third-party vendor collects all of the data and will not share the patient information with the CF Foundation or the care centers. The only information the Foundation and your care center will receive will be the results. The results will not include any personal information.) The anonymity of the survey helped me feel like I could be completely honest. I took my time to really think about the questions and my answers. This is our opportunity to make our health care better!
One of the questions that I thought was interesting was about race and ethnicity. Once upon a time, we thought that CF was just a northern European white person's disease. Now, we know it is a global disease that affects all races and ethnicities. When I asked my care team why this question is important, they said the survey should help determine whether there are any disparities in care, and hopefully help improve practices so that care is given to everyone in the same manner. I think the statistics obtained in this area will be especially useful.
So I have a request of you -- whether you're an adult with CF or a parent of a child with CF: help make our medical visits more productive and useful. Help the clinic staff become more aware of our distinctive needs. It all starts with filling out this survey and sharing our experiences openly and honestly.
We are on the precipice of CF pivoting toward a much more manageable disease with effective, responsive health care. But it starts with us: the patients, the stakeholders. Please fill the surveys out -- online or when they arrive in the mail -- and start the process of getting more involved with your health care.
Adult with CF
Rich was diagnosed with cystic fibrosis in 1969 when he was 6 months old. He also had an older sister with CF. Rich is a tough fighter who resides in New York City, and looks forward to many more years fighting CF.
May 2019 -- We were deeply saddened to learn of Rich's passing. Rich opened his heart to the CF community through our blog. He will be missed by many.
Share this Post
This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails