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.
Dana Handler, an intern with the Foundation's advocacy team, recounts her experience and explains her renewed confidence that we'll find a cure for cystic fibrosis.
August 23, 2016
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For 16 years, a few blocks away from me, Colleen smiled. For 16 years, a few blocks away from me, Colleen laughed. For 16 years, a few blocks away from me, Colleen lived with cystic fibrosis. At the age of 16, a few blocks away from me, Colleen passed away.
My best friend passed away at the age of 16. While I was left without my best friend by my side, I was also left with this inexplicable sensation that I had not done enough for her, for the disease, for the community. The response I received in return from those around me was one of pity. They viewed my “make a difference” mentality as cute and claimed my guilt was unfounded. They did not understand and were incapable of understanding. I was doing this for Colleen, but I was also doing this for Colleen's older sister, Erin, who also has CF. Thus, it was simply not a want to do more, it was a need. It was a responsibility.
This obligation led me to find ways to advocate, specifically the Cystic Fibrosis Foundation's Teen Advocacy Day. The event brings teens from across the country to Capitol Hill to advocate on behalf of their loved ones with CF. The simplicity of advocacy resonated with me. By telling my personal story, I was able to make a difference that had tangible results. I no longer had to wonder if my work was changing anything. This time around I could see it, and slowly the guilt that had been eating at me began to diminish.
The impact of advocacy on my life was so powerful that I applied to be an intern at the CF Foundation, focused on Teen Advocacy Day. To my sincere surprise, I was chosen for the internship, along with Erin Baranko and Paul Freeman. We held the title of public policy interns and were specifically assigned to help organize and plan Teen Advocacy Day.
As I stepped into the Foundation's building on my first day of work, I suddenly felt an overwhelming sense of accomplishment. This was not the feeling of my accomplishment, but of the Foundation's accomplishments. As cliché as it sounds, I was star-struck to be surrounded by individuals who helped to ensure that Colleen lived as long as she did and those who were truly “adding tomorrows” for Erin.
The employees in the building, in every single position, were simply unaware of the true impact and power of their jobs. I felt confident that if any other loved one of someone with CF walked into that office, they would marvel at the individuals walking those halls. My superheroes were oblivious to my high regard for them.
I was astonished to learn that most of the Foundation staff had no prior connection to CF. I was there because I felt I had to be, but these individuals were there because they latched onto the story and progress of this disease. They latched onto the stories that I and others tell, day in and day out. Their motivation and drive to bring change motivated me more than I even knew possible.
I learned from their every move. Most important, I learned and discovered new avenues through which to channel my energy. Before my connection with the Foundation, I was overwhelmed by what I could specifically do to support change. I was lost.
My experience interning for the Foundation opened my eyes to the work imperative to reaching the ultimate cure for every individual living with cystic fibrosis. Not once in my 19 years had I ever felt more hopeful and confident about the future of this disease. While that may sound nice, unless you truly know me, you are probably unaware of the power of that statement. I am one of the most doubtful and “glass half empty” individuals. But there is no team of individuals I would trust more to fight for Erin. I still fight for Colleen, but this time around, I believe that the cure is in sight.
Friend of two individuals with CF
Dana’s best friend, Colleen Lusk, passed away in 2013 from cystic fibrosis. Dana now advocates in memory of Colleen and in honor of Colleen’s sister, Erin, who lives with CF. She currently attends Indiana University and is studying recreational therapy. In 2016, she interned for the Cystic Fibrosis Foundation in its public policy department. Dana is a three-time attendee of the Cystic Fibrosis Teen Advocacy Day, and received the Greater Illinois Area Chapter’s Outstanding Advocate Award in 2014. Follow her on Twitter and Instagram @2hot2handler.
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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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