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.
Lung transplant can be difficult emotionally and physically. It's impossible to go through the process alone. People who are going through the process need many kinds of support from friends and family.
The lung transplant process places unique demands on people who are going through it -- physically, logistically, emotionally, and financially. A person going through the lung transplant process needs to learn, know, and do things that go far beyond the medical situation. And, people considering or going through this process will have to do all of this while trying to maintain their physical health. Although your cystic fibrosis care team, as well as your transplant team, will do all they can to support you during this process, you will also need the close support from the social network that is made up of your family and friends.
Transplant candidates will need help at many points during the process. Because transplant is such a complex process, most transplant centers require that candidates gather the necessary social support to help navigate the transplant process. Different transplant centers may have their own requirements, so it is important to discuss these with your transplant team, including how you will get to and from medical appointments pre-transplant and during transplant recovery.
Transplant candidates may come to rely on family and friends for basic help. Everybody is different, but this could range from transportation to and from medical appointments, to help finding and moving to a residence that is close to the transplant center, if necessary, or shopping for groceries. In addition, if you become unable to make important decisions, it will be important to designate someone you trust to make medical and other important decisions for you. During recovery from the transplant surgery, transplant recipients will be physically reliant on their social support system. Because of the skills and trust involved, you will want to make sure your friends and family are capable of providing you with the kind of support you will need. Talking with your CF care team or the transplant team may help you gather the specific information about the kind of support you will need and the characteristics to look for in a support person.
There are aspects of transplant that people don't understand unless they have been through it themselves. CF Peer Connect is a one-to-one peer support program for people with CF and their family members ages 16 and older. Connecting with a peer mentor provides an opportunity to talk with and learn from someone who is also affected by CF and has gone through similar experiences, such as lung transplant.
Another form of social support from the CF community can be found in virtual conferences and events. Designed by and for adults with cystic fibrosis and their families, virtual events -- including the annual BreatheCon, CF FamilyCon, and topic-specific CF MiniCons, including CF MiniCon: Transplant -- provide the opportunity to connect, share, and learn from peers through open and honest dialogue.
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