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.
As an adult with cystic fibrosis, I know just how powerful and creative the CF community can be. That's why I'm excited to announce the four 2017 Impact Grant awardees who are making a positive impact on the CF community.
Piper Beatty Welsh, J.D., M.P.A.
November 21, 2017
How I Coordinate My Care With 2 Different CF Clinics
Taking Ownership of My CF
It's no secret that the cystic fibrosis community is full of great ideas and has an even greater passion for standing together to help each other live fuller, more productive lives. As an adult with CF, I've known for a long time (36 years and counting!)
how powerful and creative our community members can be, especially when it comes to finding new ways to serve others. And it is this spirit and drive that the Cystic Fibrosis Foundation seeks to encourage through the Impact Grants program, which offers up to $10,000 to programs designed by and for the CF community.
In 2016, we announced our first round of grants, which were given out to seven inspiring and innovative groups working to meet the needs of people with CF and their families. These grantees set out to make a difference -- from providing private online
voice coaching, to family education days, to physical fitness programs. The programs have been so successful that we are renewing all 2016 Impact Grants for an additional year.
Now, we're excited to announce four new and exceptional programs as 2017 Impact Grant awardees. The Foundation is honored to be able to support these organizations in their efforts to provide new opportunities to the CF community.
The Cody Dieruf Benefit Foundation: “We Walk Together” Retreat for Mothers of Children with CF
The Cody Dieruf Foundation's “We Walk Together” program is a three-day retreat for mothers of children with CF that live in Montana, Idaho, and across the country. Retreats
offer a safe space for mothers who share a connection through CF to come together for support, education, and community. Focus topics included anxiety and depression, self-care, living through a lung transplant, and offering hope for the future.
“I am a mother who is not alone. This retreat has been a turning point in my life. I am coming to have a better grip and more control of me. I need to take care of me so that I can take care of my child.” - Lanor, mother of a child with CF
CF Society, Inc.: CFS Gazette Newsletter
The CF Society's CFS Gazette Newsletter is written for people with CF of all ages and their families. The Gazette offers news about the latest medical advances and clinical trials, CF-friendly
recipes, special profiles featuring community members, columns written by experts in the field of CF, and personal stories. Additionally, the Gazette contains cartoons, jokes, and games as part of its mission to provide people with CF and their families
with both information and entertainment, as it emphasizes the old adage that sometimes laughter is the best medicine.
Meghan's Light, Inc.: 65 Wellness Wishes
65 Wellness Wishes grants 65 health-focused awards for wellness memberships and activities in and outside the hospital. Recipients are children and adults with CF treated
at Boston Children's Hospital, with a percentage reserved for Boston Children's patients living in Western Massachusetts. The target number 65 references "sixty-five roses," a term used since 1965 by young children with cystic fibrosis trying
to pronounce the name of their disease. The project honors Meghan's lifelong passion for fitness and supports recipients in incorporating wellness and fitness into their own lives.
“Meghan was able to show others that CF wasn't going to get in
the way of her dreams and I hope that I can do the same to a new group
of people.” - Jason, adult with CF
Kid Logistics, Inc. is a nonprofit organization dedicated to helping kids with CF in Mississippi live healthier, happier lives through exercise and activity. As part of its Kids Busy
Living program, the organization funds participation in extracurricular activities such as summer camps and sports programs. They also provide educational tools for program providers about the special needs of children with CF and provide products,
such as hand sanitizer and tissues, to aid in infection control.
Congratulations again to all the grantees!
Note: Applications for the 2018 Impact Grants Program will be available in early spring. Please visit
for more information.
Piper Beatty Welsh, J.D., M.P.A.
National Strategic Collaborations Liaison
Piper was first diagnosed with CF at 6 weeks old in 1981, and has since been the survivor of two double-lung transplants. Piper attended Emory University, received her J.D. from Columbia University Law School and then went on to earn her master's in public administration from New York University's Wagner School of Public Service. She is the owner and author of the popular CF and transplant blog, A Matter of Life and Breath, and lives in Colo. with her husband and puppy.
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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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