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.
For three years, the Adult Advisory Council has been leading the way in helping the Cystic Fibrosis Foundation reach out to adults with CF. Our work as a council led to the formation of the Community Partnerships department at the Foundation and a formalized Peer-to-Peer Mentoring Program, which is being piloted in 12 CF care centers, with more to come.
August 1, 2016
Patient Safety Is a Top Priority in Clinical Research
Seeing My Future for the First Time With CF
I used to think that most people with cystic fibrosis around my age had the same general experience growing up with CF: diagnosed in the first few years of life; on a regimen of antibiotics, airway clearance and enzymes and maybe a tune-up or two every year.
I also thought that we had the same outlook: acutely aware of the realities of CF, yet still hopeful for a cure.
That was kind of the way it was before the gene was discovered in 1989. We didn't know about our CF mutations and disease modifiers. We were all just CF patients.
Today, we know whether we have F508del, G551D or other mutations. We are pre-transplant, post-transplant, double transplant or living-lobe transplant. Some of us use Kalydeco® or Orkambi®. We have CF-related diabetes, arthritis, depression and other complications.
As treatment options grow, so does the number of adults with CF. For the first time in the history of our disease there are more adults with CF than kids with CF. We are an incredibly diverse community with a full range of experiences and interesting life paths. As the chair of the Adult Advisory Council (AAC), I have gained further insight into the challenges that confront adults with CF.
As people with CF get older, so does the complexity of their disease and the complexity of everyday life.
Adults with CF are faced with so many different choices. Some are big life questions: Work or not work? Kids or no kids? IVF, adoption or surrogacy? Social Security Disability Insurance or Medicaid? Lung transplant or no transplant? Some are day-to-day decisions: Should I go to my friend's wedding even though someone else with CF will be there? Should I fly on an airplane during flu season? Should I go to this concert even though I am already worn out?
The question that is always the loudest for me: Am I living a meaningful and productive life?
Three years ago, a group of adults with CF led by Piper Beatty Welsh and Jennifer O'Mahoney joined forces to help the CF Foundation understand more fully the unique challenges that the adult CF community faces each and every day. From a series of very meaningful conference calls, the AAC was born.
The charge of the AAC is to convey the hopes, needs and aspirations of the adult CF community. The Council will address the unique challenges and circumstances for adults by:
This charge ensures that the Foundation stays true to its mission of providing all people with the disease the opportunity to lead full, productive lives.
Our work as a council led to the formation of the Community Partnerships department at the Foundation. We have helped start a formalized Peer-to-Peer Mentoring Program, which is being piloted in 12 CF care centers, with more to come. We have worked with the Foundation's local chapters to find more ways for adults with CF to get involved at the local level.
We also have helped shape content on CFF.org and are working on a project to connect the adult CF community virtually.
I am so grateful for my time on the AAC because it has given me the chance to know -- through our video conference calls -- some of the most inspiring people. Through their stories I have been able to better understand the strength and diversity of the adult CF community.
I know that each person with CF has his or her own unique path. CF is a snowflake disease. Each person has a different yet equally inspiring and beautiful story. Together we have changed the face of this disease.
The CF Foundation is completely dedicated to ensuring that each person with CF has the opportunity to lead full and productive lives, and the AAC promises to help lead the way. If you have an idea that you want the AAC to pursue, please email me at email@example.com. We would love to hear from you!
Adult with CF
KC is on the National Board of Trustees for the Cystic Fibrosis Foundation and is the chair of the CF Foundation Adult Advisory Council. She also is the team captain for the Friends of KC National Family Team, which has raised close to $250,000 for the CF Foundation since 2010. In the summer of 2001, KC threw out the first pitch at every Major League Baseball stadium to raise awareness and funds for the CF Foundation. KC lives in her hometown of Chagrin Falls, Ohio, with her husband, Justin, and their 10-year-old son, Mac. You can email her at firstname.lastname@example.org.
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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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