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.
Medical procedures -- even simple ones -- can be scary for a child. When your child has cystic fibrosis, managing the fear surrounding these necessary treatments can be daunting, but my husband and I have instituted five rules that seem to help.
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Having a child with cystic fibrosis brings lots of new things that we never imagined we would be doing when we decided to become parents. Preparing for medical procedures is at the top of that list.
As an educator and an accountant, my husband and I certainly were not equipped with any background knowledge on the possible needs of a child with a chronic illness when we became parents. I will never forget the first time Dean went home on IV antibiotics.
The nurse explaining the process to us had me convinced we would end up killing our child with a bubble in the line.
Dealing with new -- and old -- procedures and preparing Dean for them can be overwhelming and terrifying for my husband and me. We know Dean, who is now 7 years old, can become very nervous, anxious,
and fearful, so it is extremely important to us that we do all we can to help him relax beforehand and try to allay his fears. We are definitely not experts, but we try our best. Here are five rules we try to follow to help Dean prepare for a medical
procedure -- whatever it may be:
In addition to the child-life staff, we have asked for help from our favorite clinical research nurse when she is available and Dean has a procedure. We have asked for this nurse, Miriam Davis, to come and see him, stay with him during procedures,
and make him laugh. Dean has been part of several clinical research projects and formed a close bond with the research staff. These hospital staff members are a tremendous help.
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Mother of a child with CF
Rachael is the mother of her daughter, Renley, and her son, Dean, who was born with cystic fibrosis. A graduate of Indiana University and University of Indianapolis, she now works for AdvancED - Measured Progress, a non-profit education organization where
she provides support and professional learning to school and system leaders. Rachael and her husband, Matt, are very involved with the Indiana chapter of the CF Foundation. Matt is a member of the Indiana chapter's board, while Rachael volunteers
at events and has been the chair of Indiana's Cycle for Life since the first ride in 2013. Rachael is also a member of the Foundation's Community Voice Editorial Board, Research Voice, and participates in a variety of advocacy efforts. Rachael and
her family live in Indianapolis. You can contact her at email@example.com or @RachaelHavey on
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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