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.
Many young adults with cystic fibrosis who continue their education after high school look for assistance in paying for it. There are many scholarships and financial aid options available for students with CF.
Whether you plan on attending college, enrolling in vocational training, or are transitioning to employment, Cystic Fibrosis Foundation Compass can help you.
Continuing your education can be expensive. Often, two- and four-year colleges and universities offer merit- and need-based scholarships, but the universe of scholarships is much broader than educational institutions. In fact, many organizations offer
scholarships and financial aid opportunities based on different criteria. For example, scholarships might be based on being involved in athletics, being in a military family, having a skill or ability, having cystic fibrosis, or having a chronic disease
in general. When you start your search, it might be helpful to think about different types of scholarships for which you might be eligible.
Several organizations list scholarship opportunities specifically for people with CF, including:
The Federal Student Aid Information Center at the U.S. Department of Education provides information about finding grants and scholarships, including tips on
where to look for them and how to apply for eligible opportunities.
The National Association of Student Financial Aid Administrators has a database of financial aid options that you can search for by state.
While you are planning for continuing education, it is important to consider your health insurance and whether your current health insurance will cover you in the next
phase of life. There are several coverage options for college students:
“I called Compass when I was dropped from my parent's insurance plan due to age limitations. They were extremely helpful, found insurance plans that covered my medications and doctor, and guided me through the entire process. I definitely recommend
them.” -- Justin C., an adult with CF
As you prepare for college and possibly living in a dorm, you may ask for special accommodations, services, or changes to maintain your health. Your CF care
team can help guide you through the right questions to ask and how to start planning.
Compass can help you plan for the future so you don't have to worry about what's next. Call Compass at 844-COMPASS (844-266-7277) Monday through Thursday, 9 a.m. until 7 p.m. ET and Friday, 9 a.m. until 3 p.m. ET, or email firstname.lastname@example.org.
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