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.
Since I could remember, my sister shared her CF story to raise awareness, and she inspired me to do the same. Now, with this year's Teen Advocacy Day, we finally get to advocate together.
July 1, 2021
How We Dealt With Our Newborn’s CF-Related Bowel Problems
How CF Impacts My Relationship With My Daughter
My family and I all have different ways of raising awareness of cystic fibrosis. At the beginning of each school year, my younger sister, Aine, who lives with CF, brings her vest machine to class and explains to her classmates her morning routine of treatments
and pills to educate and share her experiences living with the disease. My parents always take the time to explain to new people they meet the long list of medications my sister takes over dinner, holding their interest on how revolutionary therapies have
changed her life. For me, my advocating journey began when I was 13 years old at the Foundation's Teen Advocacy Day (TAD).
TAD is an event like no other - teens from around the country gather at the nation's capital to speak to their representatives about their loved ones with CF and important policy changes that could improve their lives. On my way to Washington D.C. for the first time, I was coaching myself on the insurance plans for those with pre-existing conditions, the importance of funding for the National Institutes of Health and Food and Drug
Administration, and how they served people with CF.
Learning about the American health care system was daunting at first, but I realized that I knew the ins and outs of CF. After attending TAD for several years, staffers began to recognize me each June, and had more questions about how my sister was doing
and what they could do to help. That, at its very core, is what advocacy is all about.
Spreading awareness about CF, engaging others, and inspiring them to answer the call to action has always been our goal, no matter the setting.
My family and I will talk to anyone and everyone from the bagger at the grocery store to legislators. After watching my sister grow up with this disease and never letting it slow her down, I know that there is nothing that could possibly stop me for fighting
for her and the CF community.
Due to the COVID-19 pandemic, this year's TAD was virtual. While it's not quite the same, a virtual event has allowed for teens with CF to participate as well, including my sister. It meant the world to me to have my sister by my side as we shared the
lobbying spotlight and told our story together.
For Aine, this opportunity has been an amazing experience and a blessing for her to participate especially with other teens with CF across the nation. She prepared for weeks in advance of the event because she knew the importance of her story, and sharing
it, keeps the advocacy world turning until the path to a cure for all is clear.
Everyone in the CF community has a story to share. We learn early on how to explain this complicated disease to friends, family, and sometimes, complete strangers. I don't think I've ever met a person in this community who was scared to explain what life
with CF is like, or to spread awareness and knowledge.
No matter where you come from, what age you are, or your connection to CF, everyone is committed to the cause for a cure. This year I have never been more grateful to be a part of it.
Being able to advocate Aine's story has shaped my life in many ways. Each year I have made life-long friends within the CF community and learned something new about the ever-changing federal health care system. Most importantly, it's given me a direction in
life that I aim to pursue. Sharing our CF stories with those outside the community is a critical part of advocacy, but it also shows ourselves that we are not alone in this fight -- we are advocating for each other.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Sister of a young adult with CF
Fiona is a sophomore at Quinnipiac University and is studying and undergrad in film, television, and media arts as well as pursuing her master’s degree in elementary education. She wants to work in children’s educational programming, specifically in the
content creation for children with genetic disorders. You can connect with her on LinkedIn or on Instagram.
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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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