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.
Check in with your cystic fibrosis care team several months before your trip.
If you're thinking about taking a trip, it's recommended that you to talk to your cystic fibrosis care team several months before you make any travel plans and book any activities. Your CF care team can help you arrange necessary tests or treatments before you leave home, help you identify whether any special travel accommodations are needed and prepare documentation you may need.
Before traveling, your CF care team may conduct a medical assessment to determine whether it's safe for you to travel. If you're planning to fly, this could include a high-altitude test.
Most people with CF -- including those with minimal or moderate lung disease -- are able to fly without any problems. Others, however, need oxygen on the flight, and some are not able to fly at all. This is because air pressure and oxygen concentration at high altitudes are lower than on the ground. This can make it more difficult for people with decreased lung function to breathe.
If you're thinking about taking a trip that requires one or more flights, your CF care team may prescribe a high-altitude test to make sure it is safe and comfortable for you to fly. If the test shows that your blood oxygen levels could be affected, you may need supplemental oxygen while in flight. This may be the case even if you do not normally require extra oxygen.
It's a big world and there are many places to visit. However, some places may be less ideal travel destinations than others because they lack resources that people with CF need to care for their disease. Before booking your ticket, it may be helpful to talk with your CF care team about travel destinations you're considering.
In the U.S.: If you're planning to travel within the United States, rest assured that the Foundation's network of accredited CF care centers is nationwide. You can get high-quality, specialized care at any of the more than 130 CF care centers and 53 affiliate programs nationwide. However, not all Foundation-accredited care centers may be covered under your health insurance plan, so you may want to review your plan's coverage or contact Cystic Fibrosis Foundation Compass before seeking care to avoid any unexpected charges. Find a care center by zip code.
To contact Compass, call 844-COMPASS (844-266-7277) Monday through Friday, 9 a.m. until 7 p.m. ET, or email firstname.lastname@example.org.
Internationally: If you're thinking about international travel, consider choosing a destination with a comprehensive CF care center, which will ensure that, if you need it, you can receive high-quality care when you're away from home. Find what medical resources are available in the country you're considering visiting by contacting the country's CF organization. You can find a list of those organizations at Cystic Fibrosis Worldwide.
For the most part, people with CF can enjoy many of the same activities as people without CF. Still, there are some activities that pose greater health risks and should be carefully considered before doing. You can talk to your CF care team if you are unsure how risky a certain activity is for you. Examples of activities that pose some risk:
If you have questions about whether an activity is safe, talk to your CF care team.
For people with CF who live outside of the U.S., traveling to the States for vacation, university or an extended stay also requires preparation. Prior to your departure, it is important to talk with your CF care team so that you can work together to get any necessary vaccinations, medications, therapies, clearance and coverage for care. In addition to information about the various medical aspects involved in traveling with CF, your care center should also be able to provide you with information about local CF care options and help you develop a plan for emergencies.
To further coordinate your care while traveling to the U.S., you can look up the state that you are visiting using our “Find a Care Center” tool. Once you have selected the state from the pull-down menu, contact the center that comes up in the search results and ask a list of key questions to ensure that you can utilize the center as a resource and receive any necessary care. Typically, the program coordinator or another member of the CF care team can provide you with important contact information or explain the options available for international travelers in need of emergency CF care.
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