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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
For many, attending college is one of life's important milestones, and a big step towards building the future you want. Having cystic fibrosis doesn't mean you can't pursue your academic goals and dreams, but a new environment can present new obstacles and challenges.
As you prepare for and attend college, you may need to ask for special permissions, services or changes from your school to help maintain your health. Examples include having a single room in college or being allowed to park your car close to an entrance. There are laws that protect your rights and ensure your medical needs are met while at college. Your CF care team can help you learn more about the rights of students with CF and how to work with your school.
Colleges, universities, vocational training centers and other places of higher education that get federal funds are covered by Section 504 and cannot refuse to admit a qualified student solely because the student has a disability or chronic medical condition, like CF. Most colleges and universities have an Office for Students with Disabilities that can help you or your child get needed accommodations. If a school of higher education has no such office, there should be someone in the school's administration who can help you obtain accommodations because of a disability. Contact your school to learn about help available for students with disabilities.
You also can meet with someone at the school to talk about your concerns. You do not have to tell the school that you or your child has CF, but you will need to tell them about CF if you request accommodations that you or your child needs because of the disease.
When asking for accommodations, get a written agreement with the school that lists the changes that need to be made. You may request an accommodation from the school at any time. If you or your child leaves home to attend school, contact the CF care center nearest to the school at the beginning of the school year so they can help you with any treatment or health problems during the year. Don't be shy about asking for these accommodations. Having the accommodations will help you have a better college experience.
Your CF care team can help you determine the necessary accommodations and work with the school as needed.
Hear other students with CF talk about how they've been able to manage their disease while still participating in college life.
If you cannot get changes from a college, university or vocational school, you can file a complaint with the school. Your CF care team can assist with this process. You also can report violations of Section 504 to the U.S. Office for Civil Rights.
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