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 more than 100 blog posts shared on the CF Community Blog this year, we've covered a range of topics from COVID-19 to Trikafta® and are looking back at some of your favorite posts. Take a look at the countdown to the most-read blog post below.
December 28, 2020
What I Learned Going Off of Trikafta
Experts at NACFC Gave Me Facts About COVID-19 -- and Peace of Mind
Reproductive Health Q&A: How Modulators Affect Fertility and Pregnancy in CF
By Dr. Jennifer L. Taylor-Cousar and Maddie Poranski
Does Trikafta® increase the chance of pregnancy for women with cystic fibrosis? Can men regain their fertility on modulators? I recently had a candid chat with the chair of the Women's Health Research Working Group to find out the answers.
9. Being a CF Spouse During a Pandemic
By Julie Riedy
Summer 2020 is simply not like the others. For me, a teacher and CF spouse, the unknown is taking away some of the normal summer bliss. But it's been hardest on my husband who feels he is holding us back as stores and restaurants gradually reopen.
Wearing a Mask is Not About You
By Gina Alejandra It's troubling that many people without chronic illness feel wearing a mask is too much of an inconvenience for them.
Trikafta Caused My Anxiety and Depression to Return
By Lauren Lavelle
After finally feeling like I had the right medications to manage my anxiety and depression, I started Trikafta®, and everything changed. Struck with fatigue, all I wanted to do was stay in bed.
What to Look for in a Relationship When You Have CF
By April Biggs
Having cystic fibrosis will interfere with your relationships. I'd like to share with you some hard-won lessons about how I continue to keep my romantic relationship healthy.
Your COVID-19 Questions Answered
By James Lawlor
At ResearchCon 2020, President and CEO Dr. Mike Boyle answered some of the community's top questions on COVID-19. Here's your guide to hearing the answers to your questions.
What I Learned About My Trikafta Weight Gain
By Meagan Helmick
Trikafta® has done wonders for my health but not my waistline. I was relieved to find out, however, that I wasn't alone in my concern about my sudden weight gain and that bringing the topic up to my care team didn't mean that I wasn't grateful for all
Trikafta has done for me.
Trikafta Shattered My Negative Attitude and Expectations
By Vincent Donato
Having already been underwhelmed by Orkambi® and Symdeko®, I was skeptical about whether the triple-combination therapy would live up to the hype. However, after a month of being on Trikafta®, I feel improvements in my lung
function, weight, and overall energy.
Tips on Surviving Quarantine From a Person With CF
By Leah Schwanke
Is being cooped up at home giving you the blues? Welcome to the world of cystic fibrosis patients! We know all too well what it is like to practice social distancing and to shelter in place.
Facing the Monster: My COVID-19 Experience
By Robyn Petras
Finding out I had COVID-19 was frightening, but much of what my brother and cystic fibrosis taught me about emotional resilience helped me get through it. This is the story of my journey surviving cystic fibrosis and COVID-19.
Interested in sharing your story? The CF Community Blog wants to hear from you.
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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