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.
Although I have no personal ties to people with cystic fibrosis, I developed my own connection to the disease -- first as a biology student understanding the science behind CF, and second as a member of the Tomorrow's Leaders College Program, where I learned about the people behind the statistics.
June 17, 2021
Looking Back at the First Year After My Son’s CF Diagnosis
Dealing With Ignorance When You Have CF
“What's your connection to CF?” I get asked. With a brief pause, I respond that I have no connection.
So, you might be wondering how I got involved with the Cystic Fibrosis Foundation. To help you understand my journey, I have to take a step back into the past. I majored in biology at university. Several of my interests included learning about anatomy,
the structure and function of proteins, and the pathogenesis of disease that ultimately led me to choose my major. I took the introductory courses
that discussed mutations and learned about the basics of proteins and protein formation; thus, my very first understanding of cystic fibrosis started in the classroom. Learning about the
disease from a scientific vantage point was merely the first layer that led to my eventual involvement with the Foundation.
My understanding of the CF community and who was a part of it didn't evolve until I graduated from university. It was the summer of 2020, and like many other graduates, I focused intently on the next step for myself, which included applying to jobs. I
organized charts and tables that outlined job applications in great detail. Knowing that I needed some guidance and clarity with the application process under the haze of uncertainty during the pandemic, I decided to meet regularly with a member of
the career center from my university.
I remember that during one of my meetings, my career advisor suggested that I look into the Tomorrow's Leaders College Program because of my interest in science, research,
and medicine. That same day I browsed through the CF Foundation website and looked at the “apply” button that was staring right back at me on the luminescent screen. I was struck with the curiosity to learn more; and thus with the click of a button,
I was through the second layer of getting involved.
Curiosity was what initially captured my attention, but meeting the CF community is what drew me in.
I learned so much through my involvement with the community, but one of the major things that I took away from the experience is that I learned to see CF through a multifaceted lens. I could take my initial understanding of the science behind CF and then
see it through a new perspective that included the people behind the disease. I was motivated by people who spoke about advocacy and fundraising, which encouraged me to get
more involved by signing up for advocacy alerts and start fundraising. Additionally, learning about the disease, the challenges, and victories from various perspectives
are the parts that I enjoyed and stayed with me the most. Thus, the most integral layer to my involvement with CF has been getting to hear the voices behind the disease and the voices from the entire community that is working to find a cure.
The opportunity I have had with the CF Foundation has had an impact on me. Despite my lack of connection to CF, being involved made me realize that I can still make an impact and be another voice to advocate and get others to learn more. I have gone from
understanding CF through a microscopic lens, to viewing it from a macroscopic and interdisciplinary approach that encompasses different facets.
No matter how I define my CF connection, I have learned I must never lose sight that behind the name and statistics of the disease, there is a strong group of CF fighters, families, and community.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Tomorrow’s Leaders member
Stephanie earned a biology degree from Providence College and is a planning team member for the 2021 Tomorrow’s Leaders College Program. She is from Rhode Island and lives with her parents and her energetic dog, Clifford. During her free time, she enjoys
reading, learning languages, going on walks, and listening to music. Feel free to connect with her on LinkedIn.
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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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