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.
Austin Faught started advocating for those with cystic fibrosis in 2016 when his health insurer dropped his son's CF care team from its plan. He has found that advocacy gets easier with practice.
March 10, 2017
Understanding the Differences in Survival Between Canadians and Americans With CF
Why I Decided to Join a Clinical Trial on My 12th Birthday
In January 2016, my son, Jack, was scheduled for his quarterly visit to the cystic fibrosis clinic at Texas Children's Hospital. In light of
insurance changes in Texas, my wife wisely called our longtime health insurance provider to confirm that Jack's
CF care team would still be included in the plan. The insurance company had assured us of continuing coverage just weeks before, but the company changed its tune in that first week of January; out of left field, its answer was “no.”
Texas Children's Hospital is home to the only pediatric CF center in Houston. Where else was Jack supposed to go?
We spent countless hours on the phone battling for overrides and authorization to regain coverage for Jack's care team. We filed appeals as our insurer required and wrote letters to executives. We went to a new in-network pediatrician who graciously referred Jack back to Texas Children's Hospital. The Houston Chronicle published a front page story about Jack's situation. All to no avail.
It was in those moments that I did something I had never done before -- I called Congress. I scheduled meetings with representatives in search of their help. Texas Sen. Borris Miles, D-Houston, was the first elected official that I met with. The second one was U.S. Rep. John Culberson, R-Texas. Both men expressed genuine concern and empathy. Both sprang into action on Jack's behalf.
I got lucky. Though I was nervous in my first meetings, both State Sen. Miles and Rep. Culberson were gracious and seemed to genuinely care about my concerns. Not all of my meetings with elected officials have gone as well as those first two. In many other offices, I met with entry-level staff members, and I often left thinking that I had accomplished nothing. But, I learned that every meeting and every call is logged, and the impact of many can translate into real change.
I had no idea how personal situations translated into public policy, but it was clear to me that advocating for protections for people with CF is essential. I understood that Jack's story was representative of others in the CF community, and our voices needed to be heard. I'm not an insurance expert or a legislator; I'm just a dad who wants the best care for my son.
It was that desire that brought me to Washington, D.C., on March 1 and 2 for the Cystic Fibrosis Foundation's
March on the Hill. I'd had a year of support, training and participation from the
local and national offices of the Foundation. The Foundation understands very well how legislation impacts our community. They told us that
personal stories are the key to effectively communicating the CF community's needs.
At March on the Hill this year, there were 54 teams of over 100 advocates from 43 states. Collectively, we had nearly 300 meetings. Many of us, including me, were rookies to March on the Hill, but I felt familiarity on Capitol Hill. I saw Rep. Culberson, and he was truly happy to see our team and to hear about how the proposed legislation may affect people with CF.
I was nervous in my early days of advocating for Jack and others with CF, but some experiences in life aren't so intimidating once we've experienced them a few times. I'm sure there are many people who feel like I used to -- nervous about the idea of advocating to your elected officials. But, I can tell you firsthand that when you tell your story and tell your elected officials what the CF community needs, they will listen. Learn how to get involved
It is necessary that we boldly continue our work to influence the policies that benefit Jack and all people living with CF. For those of us who are advocating already, we know that this work is more than a necessity. It is also an enormous privilege.
Father of a child with CF
Austin named his son, who has cystic fibrosis, after his paternal grandfather, Jack. All three are left-handed, also known as “southpaws.” Austin, along with a left-handed business partner, run a commercial real estate company called Southpaw Realty. He lives in Houston with his wife, Kyra, his son, Jack, and their dog, Frazier. Follow Austin on Twitter @SouthpawRE.
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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.
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