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.
Earlier this month, we learned that the new CF drug Orkambi was approved by the FDA. This was such an exciting, memorable and emotional day for everyone in the CF community. We heard from many who were thrilled about the potential for this drug to help people with CF and also heard from those who would not benefit from this breakthrough. Following are some reactions from those this impacts the most: people with CF and their loved ones.
July 22, 2015
Starting a Dialogue: The CF Community Blog
Video: What’s Next for Clinical Research?
Boom! Approved!!!! The gloves are off and the fight is on! Just Bring it CF! Meet your equalizer Orkambi!!! Congrats to all my delta f508 buddies - Anna Payne | Facebook
Right now, people with CF are skydiving without parachutes - once the disease hits its breaking point (and this happens at a different age for everybody), our plummets are fast and unavoidable. Orkambi is our parachute. Orkambi can slow us down. Orkambi
can save us. - Hannah Buck | hannahbreathes
Where do I start?!? I'm sitting on a cruise in the middle of Alaska - no cell reception...no internet...yet still....somehow I get a message that the new cf drug that will slow the progression of this disease for Gavin and Jake has OFFICIALLY BEEN APPROVED!!!
What?!? It's here?!? All of the blood, sweat and tears (not to mention massive amounts of cold hard cash) that so many of you have given to the Baker Boys' Battalion over the past 13 years is working! Seriously, guys....we're doing it.....we're saving
lives. Orkambi....this new drug with a crazy ass name will give us more time....more days....more weeks....more months....more years....to find the CURE! It's really happening....it's really here....and I'm really sitting on this cruise in the Internet
cafe looking like a crazy person with tears streaming down my face.....my heart is feeling very full of hope because this might be the very first time since 2002 that I have felt brave enough....strong enough.....safe enough to believe in a future
- a real future beyond 40 years- for my boys. I'm not sure what to do with all of these emotions I have coursing through my body, but I do know that tonight I will raise a glass (maybe several) in sincere gratitude to each of you for allowing me to
know what this feels like.
<3 <3 <3 <3 <3 - Pam Baker | Facebook
HUGE NEWS! This benefits 50% of CF patients with ONLY homozygous DF508. Since I am heterozygous DF508, this won't benefit me at this time. Happy but sad. - Kristina de Bree | Facebook
Today is amazing simply because it represents yet another victory of our incredible community over this deadly little monster called cystic fibrosis. This approval, in other words, represents the strength we have in numbers (however small we might seem)
and the breathtaking tenacity, courage, and commitment of our team against what sometimes can feel like an unstoppable enemy. It represents US, beautiful people. Because believe it or not, WE made this happen. - Piper Beatty | A Matter of Life and Breath
Tears for my angel that never was able to receive these amazing drugs…and tears of JOY for my son
<3 - Margarete Cassalina | Facebook
Wonderful day in the CF community, however, it comes with mixed emotions. From an insurance/Medicaid standpoint, I know we have our work cut out for us. - Marissa Benchea | Facebook
I had the privilege of participating in both the phase 2 and phase 3 trials for the combination of Kalydeco and Orkambi. Ultimately, I had to drop out of the phase 3 study because Orkambi wasn't the right fit for me. I am still celebrating today for
all those with CF who will be helped by this drug. I know my drug is out there because I know the CF Foundation will not rest until there is a cure for all people with CF. - KC White | email to the Foundation
Great news today in the treatment of Cystic Fibrosis! It is one of the biggest medical advancements I have seen in my lifetime for the daily fight against CF that I live with along with my brother.
This medicine has been found to have drastic improvements on quality of life for those that have been participating in the study for it over the past several years. I have prayed so incredibly hard for this medicine to hit the market while we are still
healthy enough to benefit from it.
While it is not guaranteed that this will replace lost lung function, it is an incredibly hopeful reality that it will drastically slow any further decline.
While this is a great success for the largest portion of the CF population, there are so many who are close to me with other, more rare, mutations, and I hope and pray that the continued development of technologies will reach EVERY person with CF #SoonerThanLater!
Thank you #Vertex and #CFF!
- Brian Callanan | Facebook
Senior Manager of Community Partnerships, Cystic Fibrosis Foundation
Danielle listens to and partners with people with CF and their families to create meaningful opportunities for connection. She also leads the creation of online spaces and events for people in the CF community to connect, learn, share and inspire each other. Danielle earned her B.A. in communications from American University in Washington, D.C. She currently lives in Littleton, Colo., with her husband Vince and dog Baci.
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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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