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 life milestones wouldn't have been possible without the drive and dedication of the generous people who donate to the Cystic Fibrosis Foundation.
June 27, 2016
Walking the Line Between Husband and Caregiver
How One Question Launched the Senate CF Caucus
When I was diagnosed with cystic fibrosis at the age of 12, I did not know what this disease was. Back then, we didn't have the internet to google all the horrific details of CF, so all I could think to myself was, “OK, we finally have an answer to why I have felt so sick the last few years of my life.”
I remember my mother and father being visibly upset when they were told the news. If I could go back in time and tell my parents, and everyone else who thought that I was given a death sentence, that I would be doing pretty good 19 years later, I sure would!
Looking back, I can say that I never let that diagnosis stand in the way of living out my dreams. Even at an early age, I was driven to be successful in whatever I put my mind to. But as someone with CF, my “bucket list” was a little different than others who weren't battling a life-threatening genetic disease. My bucket list included graduating high school, attending and graduating college, having a career, getting married, having a family, owning a home and living a long and prosperous life.
Nineteen years later, I have accomplished many of these items. I graduated high school and college. I have a full-time career. I married a wonderful woman, my high school sweetheart, who accepts me for who I am … and we have a growing family. We are beyond fortunate to have our daughter, who continues to inspire me to be the healthiest version of myself, and later this year we are adding twins.
But these life milestones wouldn't be possible without the drive and dedication of the generous people who donate to the Cystic Fibrosis Foundation. The advances in medical treatment that have been made in the last few decades have allowed me and thousands of others battling this disease the opportunity to follow our dreams. I honestly do not know where my life would be without the researchers, doctors and nurses who are supported by the Cystic Fibrosis Foundation.
To show my appreciation and gratitude, I walk in Great Strides every year. I want to show all the people who helped me live the life that I imagined for myself -- as well as the younger generation of people with CF -- that I am doing great. As one of the 2016 Great Strides Ambassadors, I want people to know that I am living proof that their donations truly make a difference.
There are so many people whom I will never get the opportunity to personally thank. So my promise to them is that I will never take this life for granted. I have been afforded the opportunity to make my dreams come true and have the possibility to pursue many more goals in my future … all thanks to the selfless people who want to see the day when CF stands for cure found!
Adult with CF
Born and raised in Ohio, John was diagnosed with cystic fibrosis when he was 12 years old. Today, he is married to his high school sweetheart, is a father and works full time. John is living his dreams and taking CF along for the ride. He credits his healthy life to the support of his wife and family, as well as the Cystic Fibrosis Foundation’s dedication to research and care. John chronicles his journey with CF in his blog, Living My Dreams With CF.
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
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails