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.
Regular CF care center visits are important to maintain your health. The following tips are intended to help you make informed decisions to protect yourself and others from catching and spreading germs while at a care center visit, in the hospital or in any other health care setting.
The following recommendations are based on the infection prevention and control guidelines for CF.
You are an important member of your CF care team. While you depend on your team members at clinic for essential guidance on your medical care, you can suggest ways to help reduce the risk of spreading germs during your clinic visits.
Talk to your care team about any questions or concerns you have about germs and the risks and benefits associated with any part of your treatment. Although germs are everywhere, there is a lot that you and your care team can do together to reduce the
risk from germs while maintaining your health through regular clinic visits.
Germs can spread as far as 6 feet (2 meters) through droplets released in the air when someone coughs or sneezes.
Try to stay at least 6 feet away from others with CF and anyone with a cold, flu or infections while at clinic or in the hospital, where you're more likely to be around others who are sick.
You can catch and spread germs when you touch something with germs already on it, like a doorknob or handrail, and then touch your eyes, nose or mouth.
Wash your hands with soap and water or clean them with an alcohol-based hand gel. Encourage your family and friends to keep their hands clean as well.
Everyone should wash or clean their hands:
Wearing a mask can help you reduce your risk of breathing in or spreading germs to others. The mask can block out germ-carrying droplets or remains of droplets that can be suspended in the air.
When you enter any health care setting, wear a surgical mask. Use the smallest mask possible to fit your face and replace the mask if it gets wet.
You can remove your mask:
If wearing a mask makes it difficult to breathe, talk to your CF care team about other options to protect you from germs.
You can spread germs to others when you cough or sneeze. Germs can remain in the air on tiny droplets -- ready to be breathed in. They can also remain on surfaces long after you've coughed or sneezed on or near them.
Use a tissue when you cough or sneeze. Throw the tissue away immediately, then wash your hands with soap and water or clean them with an alcohol-based hand gel.
If you don't have a tissue, cough or sneeze into your inner elbow. If you cough or sneeze into your hands, you should wash your hands immediately afterward.
Just as when you do your treatments at home, it is important to clean and disinfect your nebulizer when you are in the hospital. Work with the hospital staff to keep your nebulizer clean and disinfected since you can breathe in germs through your nebulizer
and risk developing a lung infection.
People with CF should have their own nebulizer and perform respiratory treatments in separate rooms to avoid spreading germs.
Vaccinations help your body protect itself from germs, like the flu virus, which are especially dangerous for people with CF.
Help your body guard itself against germs by staying up to date on your vaccinations. Encourage your family and friends to also get vaccinated to reduce the risk of spreading germs.
For a list of what vaccinations to get and when to get them, talk to your care team at your next care center visit.
You can also visit the Centers for Disease Control and Prevention's website.
Watch the webcast below to hear three CF care experts discuss lowering the risk of spreading germs in CF clinics and hospitals, including:
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