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 120 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, 2018
Dear Me, It’s Me: Get Your Act Together
CF Is Nothing But a Plot Twist in Eden’s Story
10. The Path Between Hope and Pessimism
By Ray Poole
When my wife’s health declined and we didn’t know if she’d be able to undergo a lung transplant, I decided to reject blind optimism and pessimism and chose a third path. Read the full post.
9. My Slide Into Substance Misuse
By Marieliz Landa
I began taking prescribed medication to control my cystic fibrosis-related pain. Soon, the medication tried to control me. Read the full post.
8. Remembering Claire Wineland
By Katherine Russell-Sponaugle
Although many of us were never able to meet Claire Wineland in person as fellow CF patients, her legacy and approach to the disease continue to have a major impact on the CF community. Read the full post.
7. That Time We Went Viral and Where We Actually Are Today
By Jennifer Jones and Ron Ronnenberg
You may or may not have seen the video of the woman taking her first breath as her breathing tube is removed following her lung transplant. That was my fiancée, Jennifer. Read the full post.
6. 5 Requests for My Friends and Family This Flu Season
By Katelyn Harlow
In the past, I was hesitant to voice my needs to my friends and family -- especially when it came to germs during flu and cold season. But as I've gotten older, I've realized that these five requests can help make this time of year a whole lot easier.
Read the full post.
5. Why CF Is More Than a Lung Disease
By Jennifer Sturgeon
Although cystic fibrosis is often considered to be primarily a lung disease, it is actually so much more. Read the full post.
4. When Lungs Collapse
By Hogan Reed
I have had two collapsed lungs in three years. Here’s what I learned. Read the full post.
3. Growing Up With a Sibling Who Has CF
By Katherine Black
Growing up with my sister, who has cystic fibrosis, has its challenges. Although it is sometimes difficult to watch her have to miss out on the things she loves, I’ve been able to learn so much and connect with many other amazing family members of those
with CF. Read the full post.
2. Life on Symdeko™ Three Months Later
By Hannah Buck
I had to stop taking Orkambi® because my body couldn’t handle it. I’m having a different -- better -- experience with Symdeko™. Read the full post.
1. 5 Things I Wish People Knew About My Life With CF
By Morgan Barrett
Cystic fibrosis is a complex disease that affects each person living with it differently. I think it's so important for us to learn to understand each other, so I've come up with things I wish others knew about me and my specific experiences with CF.
Read the full post.
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Senior Web Content Coordinator, Cystic Fibrosis Foundation
Bethlehem is a senior web content coordinator at the Cystic Fibrosis Foundation. In her role, Bethlehem manages the editorial calendar, contributor relationships, and production process for the CF Community Blog. She also works to implement the editorial calendar for other areas of the site, and maintains a consistent look and feel throughout cff.org. She has a bachelor's degree in communications with a concentration in public relations from the University of Maryland, College Park. Outside of work, Bethlehem enjoys exercising, cooking, and spending time with her family. Her guilty pleasures? Watching YouTube vlogs and eating tons of chocolate.
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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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