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.
Many people might be put off by the thought of participating in a clinical trial. The increasing life expectancy for CFers like me, however, is a testament to the impact medical research can have on the development of therapies for cystic fibrosis.
Jodi Marquez Klarenbeek
August 18, 2016
Planning for CF at School
Why I Ride for CF
When people ask me why I would participate in a clinical trial, my immediate follow-up question is, “What if I don't?”
In 2013, I took a leap of faith and participated in the lumacaftor/ivacaftor (Orkambi®)
clinical trials. For me, this wasn't about the fear of what could happen if I participated. It also wasn't about not receiving the best care or not having access to incredible medications. I took part in this study after exhausting many other treatments.
The issue is that cystic fibrosis is a progressive disease. Aside from the fact that there are thousands of CF gene mutation combinations, the effects of CF are unique to each cystic.
My trial results were a leading case that supported the drug's approval by the U.S. Food and Drug Administration. Although the lumacaftor/ivacaftor clinical trial was the most life-changing clinical trial that I've participated in, the others aren't of any less value.
When I was 4 years old, I participated in the dornase alfa (Pulmozyme®) clinical trials for Genentech Inc. At the time, the medication was approved in adults but was not yet available for children under age 5. Twenty years later, this medication is still one of the leading CF treatments, and its effectiveness is only increasing as it is combined with other therapies, such as lumacaftor/ivacaftor.
A lot of people are concerned about the safety aspect of a trial, but if you think about it, the purpose of a study is to show that the proposed therapy is effective. Companies or researchers want to see positive outcomes, which also means that their intention is to set you up for success, not failure.
I was required to do several rounds of prescreening and stabilization periods to ensure that my participation was safe for my individual circumstances. Once each study began, there were continual check-ups and tests to ensure that my overall health wasn't jeopardized.
In addition to this cautionary prescreening and monitoring, participating in a clinical trial comes with a few perks. Clinical trials often allow not only
compensation for each visit but also reimbursement for transportation costs. The biggest, unexpected advantage for me was having access to a breakthrough medication before anyone else, at no cost.
There are definite unknowns when you participate in clinical trial, but there are also unknowns every time you get into a moving vehicle. If we were to think through every possible scenario that could occur before getting into a car, we'd never go anywhere.
I could ask myself a lot of what ifs prior to starting a study, but here are a few I think about: What if my results helped win approval for a medication for the rest of the CF community? What if my participation resulted in a breakthrough to a cure?
For those who aren't directly affected by CF or don't have someone in their life who is, their initial reaction may be, “Why risk your health by participating in a clinical trial? Why not opt to go with proven treatments until you can get a double-lung transplant?”
Although a lung transplant has been an incredible option for some, it's not an easy one or guaranteed to work. We also need to change our mindset to be proactive, rather than reactive. Until the last five years, much of CF therapy has been reactive. Our participation in CF research allows us to shift to a proactive approach, where we can treat the underlying cause and can fight from higher ground.
Participation in clinical trials has changed my life. Although not every trial directly results in drastic improvements, it affects someone and takes us one step closer to a cure. CF research has given me time and memories, as well as opportunities to experience life for longer than anyone ever anticipated. I participate and support CF research because I want to give back even the tiniest bit of what it has given to me. If my support means that even one life is changed, that is worth it.
Jodi Marquez Klarenbeek
Adult with CF
Jodi is a young adult with cystic fibrosis living in Oklahoma City. Originally from Iowa, she was diagnosed at 14 months of age and has fought cystic fibrosis her entire life. Her journey with CF has driven her passion for cystic fibrosis awareness, her work as a CF advocate and her participation in CF research studies. Through her writing, she hopes to give a voice to people in the community who have not yet found one. When she is not writing, Jodi enjoys working, salsa dancing, yoga and spending time with family and her husband.
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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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