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.
Lukas Daskas found something in the Cystic Fibrosis Foundation's Teen Advocacy Day that he had been searching for his whole life: a sense of community and understanding by others who know what it's like watching a loved one battle cystic fibrosis.
June 3, 2016
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When I asked Lukas “Oakey” Daskas what the best part of his first March on the Hill experience was, I fully expected him to say that it was the thrill of getting to meet with members of Congress. Instead, he told me that his favorite part was the dinner that takes place after all the meetings are over, when all the other advocates come together and share their stories from the day. He said, “It's better than Christmas morning. It's a gift for me to hear about how others are making an impact.” This statement momentarily stunned me, and I quickly realized that Oakey is not your average 19-year-old.
Oakey has been a volunteer advocate for the Cystic Fibrosis Foundation since he was 14 years old, when he signed up to participate in the Foundation's Teen Advocacy Day. He never missed an opportunity to travel to Washington, D.C., every year to meet with members of Congress and their staffers and share what life is like for his older sibling, who battles cystic fibrosis.
But it wasn't just getting the opportunity to ask Congressional leaders to support legislation that helps people with CF that kept him coming back year after year. It was the sense of community that he found among the other participants. “I felt a special connection with the other teens because we're in the same fight together,” said Oakey. Coming to D.C. every year was the only time in his life that he was surrounded by peers going through the same thing. Before joining Teen Advocacy Day, Oakey never talked about his sibling's health with others, which felt very isolating to him. Being around the other teens and participating in Teen Advocacy Day was life changing for him.
“Everything that I do in my life now is because of Teen Advocacy Day. It's shaped who my friends are and my outlook on life,” said Oakey. It's even helped determine where he is going to college. This fall, Oakey will begin his studies in journalism at American University, which is a mere four miles from the Foundation's national office where Oakey did his 2015 summer internship and only seven miles from the U.S. Capitol building where he has made his yearly journey for Teen Advocacy Day.
This year, since Oakey is 19 -- and no longer qualifies as a teen advocate -- he graduated to March on the Hill, the Foundation's signature annual advocacy event on Capitol Hill, now in its tenth year. He was the most seasoned advocate in his March on the Hill group this past February. The transition to adult advocate was fairly smooth. Oakey said the one notable difference is that the Teen Advocacy Day meetings are more emotional.
Oakey plans to continue his volunteer advocacy efforts and to remain engaged with the Foundation, particularly with the policy team. Oakey tells me that every year, he comes with a special message for Mary Dwight, the Foundation's senior VP for policy and patient assistance programs: “One day, I better get your job, Mary.”
And Mary has nothing but confidence in Oakey's abilities. “That would be amazing,” she said. “I can't wait to see what the next generation of CF community leaders will do to take the Foundation to even greater heights.”
Former Writer/Editor, Cystic Fibrosis Foundation
Dora previously worked at the Foundation as a writer and editor. During her tenure, she loved to listen to others share their memories and experiences, and consumed storytelling in all of its different forms. She constantly looks for the uniqueness in everyone's story. Dora has a B.A. in communications from the University of Maryland, College Park, and an M.S. in public policy and administration from the London School of Economics. Born in Budapest, Hungary, Dora was raised mainly in the Washington, D.C., metropolitan area where she currently resides today.
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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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