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.
Participating in clinical trials can be scary, but the sense of empowerment you get from knowing that you are contributing to a cure outweighs any second thoughts.
February 7, 2018
How My Care Team and I Grew Together
What I Learned From Fostering 3 Kids
2017 was a groundbreaking year in CF research, which is great news for all of us living with cystic fibrosis! Behind all this success are hundreds of people with CF and healthy study participants committing their time to clinical trials to push life-improving
and life-saving drugs through the pipeline. As of this month there are 63 ongoing clinical trials and 20 that are still open for enrollment at CF care centers across the country.
In 2017, I participated in two clinical trials: one was a Phase 3 study for an anti-inflammatory drug, and the other was a Phase 1 study for a drug that aims to restore CFTR function.
I have participated in CF clinical trials before, but with so many new and revolutionary drugs being developed right now, I feel that it's more crucial now than ever before for our CF community to participate in these studies.
I know that being a research subject can be scary. With research comes the unknown: How will this drug affect me? Will there be negative side effects? What if something bad happens? I am already taking so many medications, and I'm in a hospital enough
as it is -- why would I want to do more? These are all legitimate questions, and I think about these questions when I'm considering whether to participate in a new study.
I sometimes get upset, thinking, "Why do I have to go through all of this crap just to hopefully live a longer, healthier life? I shouldn't have to put my health more at risk." But then, life isn't fair, and there are many, many people in this
world who are less fortunate than I am. So, I do what I am able to do to help myself and others living with this disease, and I am grateful that I'm able to do so.
When you begin the process to participate in a study, the research nurse coordinator goes over the consent packet with you, which outlines every potential risk of the study drug and also any potential side effects that have been noted in previous phases of the study. Sometimes these risks are a bit alarming, but I always remind myself that I am participating
in these trials because I want a better future for everyone with CF. Participating in research empowers me because I want to eliminate this cruel disease completely, so that babies born with cystic fibrosis in the future will be able to lead
disease-free, healthy lives from day one.
I am deciding to put the greater good ahead of my worries or apprehensions. But to be clear, I have never been negatively affected by participating in a clinical study.
CFF.org/find has a list of all clinical trials that are open to enrollment -- ones that are ongoing and ones that are completed with results. They also
list the requirements of each study (like which mutations are required to participate), some information about the study, and which CF centers are participating.
Hopefully, your care team is keeping you up-to-date about clinical trials you may be eligible for, but I know that is not always the case. If you're interested in learning more about research and how you can get involved, a good place to start is to ask
your care team. Once team members know you are interested, they will start thinking of you as a potential candidate when they begin enrollment for new studies. Even if your care center doesn't have any studies for you to participate in, they can refer
you to other centers that do. And keep in mind, research trials pay pretty well!
For me, the good outweighs the potential bad. I want more treatment options, and hopefully a cure, as soon as possible, because time is everything. I want to live longer and healthier, and I desperately want that for my brother and sister, who also have
CF. For that reason, participating in studies for which I am eligible is 100 percent worth it for me. Until there is a cure.
Adult with CF
Morgan resides in her native Kansas City with her husband, Kory. She grew up with her two younger siblings, who also live with CF. Morgan graduated from Kansas State University in 2014, where she studied advertising, business, and Spanish, and also studied abroad in Costa Rica. She works full time, and enjoys volunteering for her local CFF chapter -- particularly for the KC Wine Opener fundraiser event. Some of her favorite things are reading, running, and traveling, and she fully believes in the importance of exercise to keep her lungs healthy.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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