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.
In the fourth installment of our “Ask a Case Manager” series, we discuss what you should consider when making the transition from high school to college.
August 14, 2019
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Just Because I Can’t Work Doesn’t Mean I Am Lazy
The transition from high school to college is seen as a special milestone by many. Since some individuals often choose to move away from home to live in on-campus housing, college life can mark the beginning of living and managing cystic fibrosis as an independent adult. If you are planning for college, you will need to balance your academic, health, and social life delicately and take some things into consideration when planning for that transition.
Colleges provide accommodations to ensure that students with disabilities have equal opportunities to participate and enjoy programs and services offered by the institution. These accommodations are protected by the Disability Services Office or Disability Office Resource Center on campus. Depending on your needs, the following can be obtained:
Another important accommodation is housing. Reasonable accommodations can be provided depending on the availability of space and the timeliness of the request. Therefore, it is essential to discuss your options for living on campus before starting school.
When considering college, it is important to factor in financial aid and scholarship resources early and often. School financial aid advisors should be able to advise you on whether you qualify for school-specific grants and scholarships. There also is targeted aid for certain groups, i.e., CF-specific scholarships. Additionally, most states have vocational rehabilitation programs that offer financial assistance for people with certain conditions, like CF, through the state's Division of Rehabilitation Services.
You may find it helpful to speak to other individuals who have gone to college. CF Peer Connect can be an excellent resource to receive one-to-one peer support from people with cystic fibrosis and their family members age 16 and older. You can be matched with someone who has gone through college and can share how they balanced living with cystic fibrosis and academic life.
CF Foundation Compass is also here to help reduce the stress of this milestone transition. Connect with a Compass case manager today. A dedicated, knowledgeable case manager is ready to work with you, one-on-one. This expert guidance is free and confidential. Call us at 844-COMPASS (844-266-7277) or email us at firstname.lastname@example.org.
Compass Case Manager, CF Foundation
Heather has 10 years of experience in patient advocacy and has been with the Foundation since 2013. She is a Certified Community Resource Specialist and is currently pursuing her master’s degree in social work from the University of Maryland, with the goal to obtain valuable knowledge to better serve the CF community.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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