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.
With nearly 90 blog posts shared on the CF Community Blog this year, we're taking a moment to look back at some of your favorite posts. Check out the countdown to the most-read blog post below.
December 26, 2019
My Strict Schedule Gives Me Power Over My CF
Recognizing Works by the CF Community
A Service Dog for My Student with CF
By Rachel Jackson, RN
As a high school nurse, I've worked hard over the last few years to help my three students with CF navigate school safely. A welcome but unexpected change to my plans was helping one of my students get her very own service dog, Rosie.
What Does “Better” Mean on Trikafta?
By Elizabeth Amber
The imagination can run wild thinking of all the possible scenarios that could happen after trying the new triple-combination modulator, Trikafta™. Managing expectations -- while allowing yourself to hope -- is how I choose to approach my wait for the
The Two Sides of Loneliness
By Holly Seay I've found it hard to cope with CF as I have gotten sicker, and loneliness comes about
in both physical and emotional ways. Even though the people in my life may not know exactly what I'm going through, I'm trying to let them in on what I'm feeling.
Diagnosed with CF at 47
By Kathy Norris
I can't say I was happy to get this diagnosis, but I was definitely relieved to have answers. At least I knew who I was in the ring with.
Just Because I Can't Work Doesn't Mean I Am Lazy
By Jenny Livingston
In an ableist society, sometimes you just have to ignore comments that make you feel worthless for not working. If I had the chance, here is what I would tell people who judge those with an invisible illness.
What I Wish People Knew About Lung Transplants
By Lauren Molasky
My relationship with the idea of a lung transplant has changed over time. Although I'm approved for transplant now, it is a complicated process with a full range of emotions. Here's what I learned along the way.
Coping with the Loss of My Brother to CF
By Melissa Shiffman
Losing my brother when I was just a teenager left me feeling isolated in my grief. There was no internet or social media in the 1980s to connect with other people with CF. Therapy and time eventually allowed me to cope with his loss, open up to family
and friends, and invite them to share in my memories.
A CF Nurse Practitioner Talks IPC and Five Feet Apart
By Betsy Bryson MSN, PPCNP-BC
With Five Feet Apart hitting theaters in March, we've been getting some questions about infection prevention control and what the film might mean for the CF community. Here's what our CF center and hospital have been doing to support the IPC
guidelines and encourage questions among our patients and families.
Things You Shouldn't Say to a Parent of a Child With CF
By Misty Roussa
After my son was diagnosed with cystic fibrosis, I was stunned by some of the insensitive questions and comments I received from friends and family. Over time, I learned that their unsolicited feedback provided teachable moments that I hope to pass along
to other families.
The 3 Words I Want Every Single Hospital Employee to Hear
By Elise Free
As the mother of a child with cystic fibrosis, here's what I wish everyone in our hospital understood about my daughter and her CF care.
Community Engagement Specialist, Cystic Fibrosis Foundation
Hannah is a community engagement specialist at the Cystic Fibrosis Foundation. In her role, Hannah engages with the CF community to develop content to support the Foundation's programs and manages the editorial calendar for the CF Community Blog. She has a bachelor's degree in public relations with minors in professional writing and business leadership from Virginia Tech. Outside of work, Hannah enjoys trail running, reading with a cup of coffee, and spending time with her family.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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