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.
My five favorite accounts on Instagram capture the spirit, strength and perseverance of the CF community online.
January 14, 2016
The Right Way to Stick Your Wife With a Needle
Teaching My Kids About My CF
What's the first thing you do when you wake up in the morning? Depending on the day, you probably hit the snooze button a couple of times before slowly easing yourself out of your bed. More often than not though, you probably reach for your smartphone before doing anything else.
As the Social Media Specialist at the Foundation, I can't resist scrolling through my Instagram feed before getting out from under the covers. Although I know that getting online isn't normally recommended first thing in the morning, seeing photos from my friends and favorite bloggers gives me the motivation that I need to get out of bed.
So, for your early morning dose of inspiration, I've rounded up five of my favorite accounts from the CF community to follow on Instagram. Check below to see if your favorite Instagrammer made the list!
5. Larry Brian (@defytobreathe)
Three years ago, Larry Brian felt aimless after quitting his job and dropping out of college when his health started to decline. But with support from his family and friends, he turned his life around and started body building and learning app development online. Now, the 26-year-old is going back to work as an iOS developer.
4. Caleigh Haber (@fight2breathe)
If there was a picture next to word “fighter” in the dictionary, you'd find a photo of Caleigh Haber, a 23-year-old recent double-lung transplant recipient. From weekend blood draws to hospital stays and pulmonary therapy visits, Caleigh captures and shares every moment of her life post-transplantation with more than 19,000 followers.
3. Somer Love (@lovetobreathe)
Somer Love lives her life to the fullest, which is most evident when you look at her photos. Her hope, positive energy and bright spirit shine through in every image. Frequently, she's seen sharing pictures with her #LovetoBreatheTokens to spread more love in the world and raise more awareness for CF. Currently, the tokens are viewed in 30 countries and all 50 states.
2. Mary Frey (@freyliving)
A video blogger (vlogger) by day, Mary Frey captures the ups and downs of her everyday life with cystic fibrosis and her husband, Peter. Don't miss the sweet shots of her lovable service dog, a standard poodle named Oliver.
1. Kassi Bacquet (@kassibacquet)
Kassi Bacquet is a mom of five, including a 3-year-old son with cystic fibrosis, Trax. Whether the California resident is sharing photos of Trax spending time with his twin sister, Tavvi, or a family portrait with all of her children, it's hard not to love this close-knit family.
Senior Social Media Specialist, Cystic Fibrosis Foundation
As the senior social media specialist for the Cystic Fibrosis Foundation, Katrina is responsible for managing the Foundation's Facebook, Twitter and Instagram pages. Prior to joining the Foundation, Katrina worked at a digital agency managing the online presences of more than 40 independent businesses across the United States. She's since enjoyed getting to know the close-knit CF community online and responding to all of your questions. A Maryland native, Katrina now lives in Fairfax, Va., with her husband. Follow @heyksquared on Twitter.
Share this Post
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.
Follow Us On
With more than 70 chapters and offices across the country, there are plenty of ways to get involved.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails