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.
Alexa was my best friend: the class clown, the leader of our wolf pack and the greatest sidekick I could ever have. Every day I spent with her was a blessing. I will cherish our memories until we meet again.
October 29, 2015
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Bringing Us Together Online
I remember the very first time we met in sixth grade and I was struck by how comical you were. Everyone wanted to be friends with you; you were over the top, lovable and had no shame (which only enhanced your humor). Over the next nine years, I was fortunate enough to have you become my best friend and one of the most important people in my life.
You weren't very transparent about having cystic fibrosis, even though we knew you were often sick and wouldn't come to school. You only opened up to me about your struggle with the disease when we started high school. As a teenager, one can be blind to how serious CF is. As our other best friend Alyssa has said, “Our attention was usually focused on 'Spicy Chicken Wrap Wednesdays,' how many times a week we could wear our favorite sweatpants and boys.”
When college rolled around, we “just so happened” to choose the same school and major (I know you really just didn't want to leave me). Then of course we registered for every single class together … literally every class. We were inseparable. You would come to my dorm, call it “your dorm” and eat all my food. But I wouldn't have had it any other way.
Throughout our freshman year you became very ill. You were constantly hospitalized, and soon you were unable to make the commute from Long Island, NY, to Manhattan for class every day.
Most of our friends and peers never would have guessed you were suffering from CF. You were the class clown, the leader of our wolf pack and the greatest sidekick I could ever have. Every day spent with you was a blessing. You would make me laugh until I cried (way too often). Luckily enough, I have an archive of stories, videos and photos to make me belly laugh until we meet again. I am also grateful to still have your family in my life and I promise to be the best aunt I can be to your nephew, “Alexander the Great.”
When you passed in May 2011, I didn't really know how I was supposed to go on without you -- no one in your life did.
As time went on, I began to understand your passing and accepted that you spent your time on this earth exactly the way you wanted to -- by eating Swedish Fish and drinking gallons of apple juice. At the end of 2011, I felt compelled to help fight this relentless disease. That was when I reached out to the Greater New York Chapter to see how I could help. “Alexa's Minions” participated in their first Great Strides walk in 2012, and since then we have raised over $10,000 in your honor. I know that you must enjoy watching our crazy fundraisers.
It felt very rewarding to support this cause in your memory, so during my senior year I decided to intern at the Foundation's Manhattan office. Three months after graduation, a position opened at the chapter. It felt as if you were putting together the pieces of a puzzle for me. I was with Alyssa when I received the call from HR that I had gotten the position. It felt so special to have her there with me in that moment, since you physically couldn't be.
Alexa, I have learned more from you than I have from any professor, textbook or life experience, and I am forever grateful to you for that. I have also learned so much about cystic fibrosis after getting involved with the CF Foundation, and I am so incredibly happy to be helping in this fight.
When we have adults with CF come to our office to speak with us, I always see a little bit of you in them -- bold, kind and, most importantly, funny! As the saying goes, “laughter is the best medicine,” and you lived as long as you did because of your out-of-this-world sense of humor. Thank you for the giggles, Alexa. I am on this journey for you.
Logistics Specialist, Cystic Fibrosis Foundation
Alyson first got involved with the Cystic Fibrosis Foundation in 2012 after the loss of her close friend. Starting off as the Great Strides team leader of Alexa’s Minions, she then became an intern at the Greater New York Chapter and eventually a full-time employee in the fall of 2013. She is passionate about photography (and expanding her camera collection), social media, family, friends and post-it notes. In her free time, Alyson works on perfecting her newest hobbies, knitting and stand-up paddle boarding. Born and raised on Long Island, Alyson currently resides in Manhattan and works at the CF Foundation Greater New York Chapter -- Manhattan. Follow @fromwesttoeast on Instagram and @alytre on Twitter.
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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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