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.
When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled.
June 7, 2016
How I Explained My CF to My Boyfriend
Why I Celebrate My Son’s CF Milestones
My daughter Andrea was only 8 years old when she learned that cystic fibrosis is a fatal disease. Soon afterwards, she approached me with several questions. Surprisingly, her questions weren't really related to dying from CF, but were more philosophical life questions, such as ...
I thought it was great that she was concentrating on how others will go through death too, because that's how life is -- whether you have CF or not. You're born, you live and you die. Luckily, she's always been a fairly optimistic girl, even when it comes to matters of life and death.
But the one question that she asked me -- that I now think about almost daily -- that I also answered yes to, was ...
Of course I answered
. How could I not? But deep inside I was saddened with the thought of a cure being so far away that I wouldn't be around to see it or worse, she wouldn't be around. In all honesty, I thought maybe a cure wasn't doable at all.
Fast-forward 12 years and my doubts of a CF cure have dwindled. Since then, the Cystic Fibrosis Foundation has advanced its
drug development pipeline
and we now have medications working at the cellular level, attempting to eradicate this disease. Hello,
Kalydeco and Orkambi!
We have more knowledge about the importance of
exercise, staying active
with CF health protocols. We have researchers dedicated to making CF stand for "cure found," and I believe that day will come in my lifetime!
I believe it so much that today I find myself wondering, "How in the world am I going to afford living in a mansion for 100 days in Hawaii!?!" What a dilemma to have, right? A dilemma that I have no issues with whatsoever!
Mother of a child with CF
Susie is a graphic designer based in Iowa who runs her own business, Tuyo Print Plus. She is a first-generation Peruvian born in the United States, and cites Spanish as her first language. In 1996, she married her college sweetheart Jeff, and together they have two children, Andrea and David. After her daughter Andrea was diagnosed with CF at age 4, Susie immediately immersed herself in fundraising for the Cystic Fibrosis Foundation, and her Great Strides team, Andrea’s Angels, was formed. In 2015, the team celebrated a record-breaking year, raising more than $30,000. Susie serves on the Board of the Iowa Chapter and the CF Parent Advisory Council at Blank Children's Hospital. Follow Angels4Andrea on Facebook.
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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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