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.
For the last four years, Camila Stassle has attended the Cystic Fibrosis Foundation's Teen Advocacy Day in Washington, D.C. As a teen advocate, Camila speaks with members of Congress about what they can do to help families affected by cystic fibrosis. Camila's younger brother was diagnosed with CF as an infant.
Published on January 13, 2014
Camila Strassle's younger brother was diagnosed with cystic fibrosis when he was an infant. Growing up, Camila struggled to face the severity of her brother's disease, and never imagined she'd be able to help him.
That changed when Camila came to the CF Foundation's website and found the Teen Advocacy Program. For the last four years, Camila has attended the Cystic Fibrosis Foundation's Teen Advocacy Day in Washington, D.C.
As a teen advocate, Camila speaks with members of Congress about what they can do to help families affected by cystic fibrosis.
“I finally realized that if I'm going to be a good sister, I need to support my brother in every way possible,” she said.
Since enrolling in the program, Camila has met with more than two dozen members of Congress. She even helped get legislation passed making it easier for people with rare diseases to participate in clinical trials without losing eligibility for public health care benefits.
“Being able to see tangible results from anything you do is really empowering, and that's one of the reasons I love Teen Advocacy Day,” Camila said. “It has been tremendously rewarding to see that our work has made a real impact.”
Preparing for the Future
Last summer, Camila took her involvement one step further when she became an intern with the Foundation's Public Policy Department. Camila worked with three other interns to draft memos, set schedules, stuff envelopes and attend briefings on the latest health care laws.
She believes the experience prepared her for her next step in life: college. A freshman at Stanford University, Camila has declared a double major in English and Health Policy.
“It's been fantastic to see behind the scenes at the Foundation and to work alongside people who are working so hard to end this disease,” Camila said. “The CF Foundation sets the standard in fighting rare diseases, so having this experience before taking health care policy classes has been invaluable.”
Also invaluable is the new relationship Camila has formed with her brother. Since becoming a teen advocate, Camila said she and her brother have grown much closer.
“I've learned so much through this process, but my biggest take away is that advocating on behalf of people with CF has helped me better connect with my brother,” Camila said. “I think it makes him happy knowing that his family is so involved in this fight - he doesn't feel like he's alone.”
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