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.
Just in time for Valentine's Day, we take a minute to look back on our top three picks for the most romantic blog posts last year.
February 9, 2017
An Ode to My Boyfriend, Frank the Tank
Deciding to Have a Second Child When Your First Child Has CF
As a communications specialist at the Cystic Fibrosis Foundation, I have the unique opportunity of curating and listening to your stories. Although there is a lot about them that inspires me, one thing that consistently strikes me is the level of love and appreciation you express for the people you care about.
No matter how hard you may fight, it is the family, friends and community standing alongside you that you often credit for where you are today. Romantic love is one potential outlet for support, but I have heard stories from members of the CF community about the everyday gestures of spouses, partners and significant others that truly put Hollywood blockbusters to shame.
So, in time for Valentine's Day, here is a round-up of our top three community blog posts that honor this idea of CF and romantic love.
Loving My Wife Was Worth Every Second
Close the door and get out the tissues because this one is a doozy. In this poignant post, Bradley Bjornstad explains why getting to fall in love with and marry his wife Kari was the greatest opportunity of his life.
After I read this post, I personally shared their
engagement video with my friends and family, and probably listened to the romantic tune playing in the background (and their self-proclaimed love mantra) on repeat for three solid days -- which, speaking of love, only ended when my own partner begged me to stop in the name of love (just kidding … it was for his sanity).
I won't spoil it for those of you who haven't yet read it, but let's just say that this is one of the community blog posts that truly made me cry. In my opinion, that is saying a lot for a Foundation employee who is moved by the community's incredible stories every single day.
Walking the Line Between Husband and Caregiver
Eddie McKinnon and his wife Jennifer are a couple that amaze me. Not only have they known each other for most of their lives, but they also are the parents of two adorable twin girls.
I can only imagine how difficult it must be to juggle the multiple responsibilities of parenthood with CF, so having a strong relationship seems crucial in terms of balance and time management. In his post, Eddie describes the role he plays in his wife's care and the importance of sometimes taking a step back to simply enjoy their time together outside of CF -- a romantic reminder indeed.
Asking for the Gift of Time
When a co-worker first shared the story of Drew Dotson and her husband Ramon, I have to admit that my initial reaction was to pull out my phone and type up a note called “future wedding ideas.” Despite the fact that, at the age of 3, I decided I would never get married, Drew and Ramon's idea to have a passion fundraising event in lieu of a traditional wedding registry won my heart.
In her post, Drew describes meeting the man who would become her husband and deciding to create a wedding registry of “future memories.” In a world where I just spent $50 on cups from Anthropologie for my own friend's wedding and ordered a Valentine's Day present for my boyfriend on Amazon Prime, Drew reminds us all of what is important in life and love.
Former Medical Communications Specialist, Cystic Fibrosis Foundation
As a former Medical Communications Specialist at the CF Foundation, Alex developed materials and website content designed to help people with CF make informed decisions about their care. Originally from Birmingham, Alabama, she has a B.A. in English from Hamilton College and currently lives in Washington, D.C. In her spare time, Alex enjoys reading, traveling, visiting all of D.C.'s fantastic free museums, listening to live music and taking too many pictures of her cats, Indy and Faulkner.
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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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