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.
To help your patients and their families learn more about aspects of their disease as part of specialized cystic fibrosis care, new educational resources on nutrition, emotional wellness, and colorectal cancer are now available.
Published on January 23, 2019
Designed to help you implement clinical care guidelines as part of specialized cystic fibrosis care, the following educational resources were produced to inform your patients and their families, and to help them more effectively manage their disease in
partnership with you.
A series of handouts were designed to help parents, teens, and adults with CF understand why good nutrition matters. Hard copies of these handouts can be ordered from the CF Center Portal.
Early Nutrition and Growth for Your Young Child With Cystic Fibrosis
Intended for parents of young children with CF, this resource discusses how nutrition affects health outcomes and how parents can help their child grow with the help of their CF care team.
Eating Healthy as a Teenager With Cystic Fibrosis
This resource highlights the importance of a healthy body mass index (BMI) and ways to meet daily calorie and nutritional needs for teenagers with CF.
Maintaining Healthy Weight With Cystic Fibrosis
Intended for adults with CF, this resource discusses the correlation between BMI and lung function, as well as how to work with your CF care team to meet nutrition goals.
Be Prepared for a Successful Colonoscopy When You Have CF: What the Guidelines Mean for You
Intended for people with CF who are going to have a colonoscopy, this resource outlines the preparation process and importance of the procedure.
Colorectal Cancer and CF: Organ Intervention
This animation discusses colorectal cancer in CF and how early screening can help reduce risk. Read
more about colorectal cancer and CF.
Colorectal Cancer and CF: The Screening
This animation discusses why it's important for adults with CF to properly prepare for a colonoscopy and the steps they can take for a successful exam.
CF and Mental Health: Building Resilience - A Guide for Parents and Caregivers
Intended for parents or caregivers of people with CF, this resource discusses the importance of the caregiver's mental health and provides examples of self-care. Electronic copies are available on cff.org and hard copies can be ordered from the CF Center Portal.
For a list of additional educational resources available to order in hard copy, visit the CF Center Portal. After logging in, go to the box that says “Forms” on your dashboard. Under “Start a New…”, select “Clinical Education Materials Order Form” to
open the order form. If you have any questions or problems with logging in, please email firstname.lastname@example.org.
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