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.
I recently attended the Cystic Fibrosis Foundation Lung Transplantation Summit. Many of the areas for improvement cited by the experts matched what I have seen as the mother of a two-time double-lung transplant recipient.
April 14, 2016
When Your Wife is Catching Up to Her Life Expectancy
Facing an Impossible List of Pre-Transplant Goals
I had the privilege to be part of the Cystic Fibrosis Foundation strategic planning committee in 2012. We discussed many issues, including mental health, pain management, specialty doctors and lung transplantation -- all things my son, Mitchell, had already experienced. While the Foundation has long been ahead of the curve in the creation of effective treatments for CF, the sale of its royalty rights in 2014 provided the opportunity to accelerate its mission like never before. These resources, as former CEO Dr. Bob Beall noted, allow the Foundation to “'dream big' in ways we never could have imagined.”
Since then, the Foundation has accelerated the implementation of the strategic plan, addressing these very important facets of CF care. Timing is everything.
Treatment for cystic fibrosis has advanced to the point where the life expectancy is around 40 years. The Foundation's primary focus over the past 10 years has been to develop drugs that can correct CF at its genetic root. With the Food and Drug Administration's (FDA's) approval of ivacaftor (Kalydeco®) and lumacaftor/ivacaftor (Orkambi®) and the Foundation's drug development program focused on developing the second generation of these types of medications, the Foundation is now ready to address other areas that affect people with CF, such as the needs of those whose health is at the point where these medications will not make them better and their only option for life is a lung transplant.
My family knows about this. Mitch has undergone two double-lung transplants and is currently approved, but not activated, for a third. I have watched Mitch's journey with CF; certainly not a straight road, but one with many twists and turns. Somehow, Mitch and our family have survived all these challenges and obstacles put in our path and have remained diligent in fighting this disease with every breath we take. Today, Mitch fights not because of me, but because of his wife and 12-year-old twin boys.
Through Mitch's transplant journeys, it became apparent to me that the process is lacking in several crucial areas. I noticed little communication among transplant centers, no best practices in place, no new anti-rejection medications on the horizon and little financial support and resources for the family members of the person with CF who have to make so many changes in their lives. As I spoke with other parents, I realized many had similar experiences and others did not know where transplant centers were located. They lacked information on when to get evaluated for a transplant and what to expect. There was also a lack of ready information regarding the transplant process for people with CF and their families.
After voicing these concerns at strategic planning meetings and talking with others at the Foundation, the Foundation announced in early summer 2015 that a Lung Transplant Summit meeting would be convened in the coming months. The meeting, held in February, brought together expert clinicians and research scientists to help the Foundation develop a strategy to improve the outcomes of lung transplant for people with CF and provide greater support for lung transplant care and research. Because treatment options for people with end-stage CF lung disease are limited and considered an area of unmet need for people with CF, lung transplantation has become a higher priority for the CF Foundation.
At this meeting, I was amazed that all the researchers and doctors in the room shared the concerns our family faced. Their comments validated my perceptions and my family's experiences regarding the transplant process for people with CF and their families.
These important issues were being addressed.
Implementing a centralized database, determining best practices and sharing this information among the various transplant centers is monumental but possible. We can improve the outcomes of lung transplants just as we can improve the overall health outcomes of people with CF. It will take time, talent, money, determination and dedication. Thankfully, the CF Foundation has these resources.
Obviously this will not all happen tomorrow and we can't change the past. But as we move forward, we can ensure that our children with CF have a brighter future with fewer challenges than the Mitchells of the world today.
As the chosen representative for the CF community at the summit, my question to the panel was the same that I asked the transplant doctors before Mitch's “do over.” “What are we going to do differently tomorrow to ensure a better outcome for our children and adults with CF?”
Thankfully, the CF Foundation is up to accepting this challenge.
Mother of an adult with CF
Gayle began advocating on behalf of her son Mitchell upon his diagnosis in 1973. This began Gayle's journey, first as a volunteer for the CF Foundation and for the past 29 years, working for the Foundation. Gayle remains committed to raising awareness, asking questions, and staying in the forefront of the CF Foundation.
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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.
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