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.
Starting at 6 months of age, I began my daily
journey battling my chronic illness, cystic fibrosis. And now, at 28, my heart
is heavy because one of my nearest and dearest caregivers passed away
unexpectedly … my father.
February 24, 2016
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When I think about what
it means to be a caregiver, several qualities come to mind -- such as
the ability to love and support someone else emotionally and perhaps
financially, to provide food and shelter. As we grow older, we go through
phases where we believe that we don't need a caregiver at all. But ultimately
we become wise enough to understand that we all need to be cared for, no
matter what the capacity.
Starting at 6 months of age, I began my
daily journey battling my chronic illness, cystic fibrosis. And now, at
28, my heart is heavy because one of my nearest and dearest caregivers
passed away unexpectedly … my father.
Bob Gaynor, a man who was
not just my father and my dear friend, but in many ways my soul mate,
left us far before anyone who knew him was ready to say goodbye.
Although a personal tragedy, I believe that my father departed
gracefully, peacefully and, most importantly, full of hope and
happiness. My connection to my father, and in turn a great deal of
what defined him, was my CF and all that came with this relentless
fight for us as a family. When you begin to understand the kind of
relationship that we had, it is clear that his commitment to me was
profound. My father gave himself fully to my fight every single day of
Growing up, I had a milder case of CF
-- mainly dealing with issues of thriving more than anything
else. When I went
away to college, I began to experience more severe respiratory problems
and was admitted into the hospital for the first time. After college, I
moved to New York City where I began an internship that quickly (and
luckily) turned into a full-time job and career path. But I struggled, to
say the least. What it means to have a progressive disease, such as CF,
began to ring all too clear for me. It became impossible for me to work,
care of myself and carry on with my everyday life in a "normal"
The past two years of my life have been the hardest that
have come to pass, not just for me, but for my entire family. Fighting
an uphill battle of constant infections
left me unable to take care of myself, forcing me to leave my job that I so
adored and move back in with my parents. In May 2015, my father made the same
decision that he had made when I was first diagnosed; he chose
family over work. His tenacious determination to give me the care that was
needed to get me back on my feet was inspired and unabated.
with him during the past six months, and my 28 years before that, has been
anything but easy. But the time that we have shared together, the lessons
that he taught me about living, the fun we had, the struggles he helped me
through and the love that he has shown me is enough to last me 1,000
As CF families, we suffer loss and understand heartache and
hardship, unfortunately, all too well. But I have made the decision to
turn my loss into unwavering strength and courage to point me in the right
direction. Some people believe that our scars make us stronger, but in
the end, I believe our scars are what heal us. Appreciate the people
in your life while you have them, embrace them, nurture them and never
ever take them for granted.
To have known the kind of care that
my father gave me has been a privilege and for that I am
grateful. I once read something that I've always hung on to and it
resonates with me now more than ever, "I didn't come this far, to
only come this far." I am going to laugh, I am going to smile and
I am going to live. My father was my biggest cheerleader and now I
am going to win this game.
July 2017 -- We were deeply saddened to learn of Amanda’s passing.
Amanda opened her home to us for a photography shoot in 2016, and her
heart to the CF community through our blog. She will be missed by many.
Adult with CF
Amanda has been fighting CF since she was diagnosed at 6 months old. Originally from central New Jersey, Amanda has been living and working in New York City for the past six years. She is a proud graduate of Syracuse University, where she earned degrees in public relations and psychology. After college, Amanda began working at a boutique public relations firm where she capitalized on her love of food and the hospitality industry. Amanda has now parlayed her work-life balance to freelance PR consulting, where she enjoys exercising her creativity with lifestyle and hospitality projects. Follow @gaynorface on Instagram, or contact Amanda directly at email@example.com.
July 2017 -- We were deeply saddened to learn of Amanda's passing. Amanda opened her home to us for a photography shoot in 2016, and her heart to the CF community through our blog. She will be missed by many.
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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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