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.
If you need to travel with oxygen, let your airline know at the time you book your ticket.
Air pressure and oxygen concentration are lower at high altitudes than on the ground. This can make it harder to breathe, especially for people with cystic fibrosis who have decreased lung function. If you need oxygen at home, you will need more when in flight. If you are close to needing oxygen at home, you will probably need it in flight. Because oxygen levels can drop at high altitudes, it is possible that you may need oxygen in flight, even if you do not require supplemental oxygen at home. Your CF team will determine whether you need oxygen in flight during the high-altitude test.
If you need to travel with oxygen, let your airline know at the time you book your ticket. It is always a good idea to let them know again before beginning your trip. If you also need oxygen at your destination or at connecting airports during layovers, you must make arrangements with a local oxygen company.
Every airline has its own policy for in-flight oxygen use. Most airlines, but not all, require people who need supplemental oxygen to carry a prescription. And only some require their own medical form your doctor must complete. Because the policies vary, it's best to check on specific requirements at the time you book your ticket. You may want to ask the following questions:
Federal regulations prohibit airlines from allowing passengers to bring their own oxygen canisters aboard to use during the flight. Some airlines provide oxygen for free. Other airlines provide oxygen for an additional cost depending on the flight route. A separate charge usually applies for each leg of the trip; that means that non-direct flights may result in two or more charges for oxygen. Be sure to check with your insurance company to determine if or how oxygen costs will be covered while traveling.
Only certain portable oxygen concentrators (POCs) approved by the Federal Aviation Administration (FAA) are allowed to be used in flight. The following POCs are approved by the FAA as of Oct. 7, 2015:
Other POC brands and models may be carried in the cabin with the batteries removed but cannot not be used during flight. POCs do not count toward carry-on limits, whether or not they are used on board. However, they must be able to fit underneath the seat or in an overhead compartment.
If you are traveling with a POC, let the airline know at least 48 hours in advance. Airline staff will confirm whether the device you are planning to use is on the list of current, approved devices and will help provide guidance on the number of batteries you will need for your flight. You will also need a medical certificate from your doctor that confirms your need for a POC during flight and the required flow rate in liters per minute.
If you need to use the POC in flight, make sure you have enough battery power to cover any travel delays as well. Most airlines suggest you have an ample supply of fully charged batteries, plus three hours of extra battery time for the flight. In-seat electrical power is only available on a limited number of aircraft, so there is no guarantee that in-seat power will be available.
If you use a POC and are traveling internationally, you will need to know what type of voltage is used in the country you're traveling to and what type of adapter or plug is needed to charge your POC. You can purchase converters and sets of adapter plugs at most travel or luggage stores and at electronic stores.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails