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.
Paul participates in Great Strides, advocates on the Hill and has even launched a CF fundraiser. Oh, and he's only 18.
September 8, 2015
Why You Should Care if IACT Expires
Award-Winning CF Nurse Credits Success to Colleagues and Team Environment
After Jillain Williams of the Kansas City Chapter told me all about 18-year-old CF brother Paul Freeman, I joked that I might need to reevaluate all my life decisions after I speak with him. Jillain's response was, “I'm old enough to be his mother and I want to be him when I grow up.”
To put things into perspective, by the time Paul turned 18, his accomplishments included advocating for key legislation on the Hill, fundraising for Great Strides and launching an annual tennis tournament fundraiser that raised more than $60,000 in its second year.
Volunteering with the CF Foundation was always a part of Paul's life, ever since his younger brother was diagnosed with the disease as an infant. He shared his early childhood memories of attending galas and walks with his parents in an effort to raise more money to help find a cure. This clearly had a great effect on Paul because he made a conscious decision at the tender age of 12 to become actively involved in the CF cause. “Once I started middle school, I felt like it was time for me to do my part,” said Paul.
Paul signed up as a CF Foundation teen advocate, and he continues to serve as an advocate to this day. Our advocacy staff described Paul as a fearless teen, speaking with Congressional members and staff with relative ease. When I shared this with Paul, he seemed genuinely surprised. He told me he didn't think of himself as fearless, he just felt like he had a job to do. Paul made such an impact as a teen advocate, that we now include advice in our Teen Advocacy Day training materials on “how to have a meeting like Paul.”
As he got older, Paul became increasingly involved with the CF Foundation, and started fundraising for Great Strides when he was 14. This year, he was the top strider in the Greater Kansas City walk. He got into this position after he started his own tennis tournament fundraiser last year.
Paul created Serving Up a Cure with a few of his high school friends to combine two of his favorite activities: playing tennis and helping to find a cure for CF. “We wanted to put on an event that other kids my age would want to attend,” Paul said about organizing the tournament. “We wanted to show them that they could get involved in philanthropy too.”
Paul starts college this fall and plans to find new ways to help raise money for CF and share his dedication to volunteering with others. I am excited to hear about what he has in store, and all joking aside, he did make me think twice about how I do my part.
Former Writer/Editor, Cystic Fibrosis Foundation
Dora previously worked at the Foundation as a writer and editor. During her tenure, she loved to listen to others share their memories and experiences, and consumed storytelling in all of its different forms. She constantly looks for the uniqueness in everyone's story. Dora has a B.A. in communications from the University of Maryland, College Park, and an M.S. in public policy and administration from the London School of Economics. Born in Budapest, Hungary, Dora was raised mainly in the Washington, D.C., metropolitan area where she currently resides today.
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, it’s easy to find and join a local Cystic Fibrosis Foundation chapter near you.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails