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.
Thinking of how you will take care of your health while traveling with CF can be very intimidating. For 28-year-old Stacy Motenko, preparation is the key.
August 24, 2015
Patient Without Borders
Jump On In: It’s Travel Takeover Week
In her role as the director of education and support at ModernHEALTH Specialty Pharmacy, Stacy has become quite the frequent flyer. From her home in Southern California, Stacy regularly travels to Florida, Louisiana and Northern California for her job. But she also makes sure to get in some personal travel as well so that she can take any opportunity to explore other cultures, and get a different perspective on the world.
But before Stacy embarks on any trip, she consults the travel checklist that she created to make sure that she doesn't forget to pack anything. “There have been times when I have forgotten medication or equipment that I needed on a trip and it was very difficult for me to track them down in a foreign place,” explained Stacy. “In those situations, I had to ask my doctor to send new prescriptions to a local pharmacy. After having this happen a couple of times throughout the years, I made my travel checklist and that has helped me to remember to pack everything I need.”
Stacy's number one travel tip is to pack extra medication, and recommends putting those medications and equipment into your carry-on luggage so that you not only have access to your medications in case of emergencies or delays, but also they won't get lost, as checked bags sometimes do. She also recommends traveling with doctor's notes to help explain, and avoid fees for, your equipment.
(Left) Stacy with all the items that go into her carry-on luggage. (Top right) The portable equipment and medications that she must pack. (Bottom right) Stacy’s personal travel checklist.
As Stacy navigated this new frontier, she did run into some trial and error once she was away from home. The first time Stacy traveled overseas, she went to Australia where she experienced some difficulty in using her treatment machine. Even with an adapter to account for the voltage difference, her treatment machine broke and she had to connect with a local CF center to get a new one. This replacement machine ended up setting off the fire alarm in her hostel, and the fire department was called out to investigate!
Although it might seem that a lot of work goes into preparing for a trip, it is well worth it. “I encourage everyone with CF to not let their disease stop them from seeing the world and from experiencing all of the things that they want to,” said Stacy. “I have traveled to some amazing places throughout my life and my travel bucket list is filled with many more places that I hope to travel to."
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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