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.
Review these educational materials on mental health, adult care, transplant, and more. Some have also been translated into Spanish to support your Spanish-speaking patients.
You can direct your patients to educational resources on cff.org that can help them better partner with you. They cover a range of topics including an overview of the lung transplant journey, an infection prevention and control wallet card, ways for parents to help the siblings of children with CF cope, and some existing resources that have been recently translated into Spanish. In addition, the Education Committee has created resources on topics important to many people with CF.
What About Siblings? Helping My Family Cope: A Guide for Parents and Caregivers
This resource helps parents discuss cystic fibrosis with their other children who do not have cystic fibrosis, including how they feel about CF, and how to help them express those feelings. Hardcopies of this handout can be ordered on the CF Center Portal.
Clinical Care Checklist for Adult Care in Cystic Fibrosis
Based on the adult care clinical care guidelines, this resource is intended to be used as a partnering tool between clinicians and adults with CF to keep track of the tests and procedures that are recommended in the Cystic Fibrosis Foundation guidelines.
IPC Passport Card
This resource was created as a continued effort to support CF care teams in the implementation of infection prevention and control clinical guidelines beyond the CF clinic. Patients can print, cut, fold, and carry the card with them to help educate health care providers about the risk from germs.
The Journey Through Lung Transplant
This resource is intended to help navigate conversations about the lung transplant process, whether that is between the care team and person with CF, or the person with CF and their family.
Cómo comer sano y ser un adolescente con fibrosis quística
(Eating Healthy as a Teenager With Cystic Fibrosis)
Newly translated into Spanish, this resource is intended to educate teenagers with CF about the importance of eating healthy as it relates to their energy and nutrient needs, as well as steps they can take to meet their calorie and BMI goals.
FQ y Salud Mental: Desarrollando Resiliencia - Una Guía Para Los Padres Y Cuidadores
(CF & Mental Health: Building Resilience - A Guide for Parents and Caregivers)
Mental health is important for all individuals dealing with cystic fibrosis, including caregivers. Now available in Spanish, this resource is intended for parents or caregivers of people with CF. It discusses the importance of the caregiver's mental health and provides examples of self-care.
Una Introducción a la Fibrosis Quística para los Pacientes y sus Familias sexta edición
(Introduction to Cystic Fibrosis DVD)
This video series, now in Spanish, features perspectives from CF care team members on CF basics, staying healthy, raising a child with CF, adult life with CF, and managing the disease for people with CF and their families. The video series complements the Introduction to CF for Patients and Their Families guide, and may also be ordered as a DVD through the CF Center Portal.
The resources listed below have been approved by the Cystic Fibrosis Foundation Education Committee. The Education Committee is composed of care team members, an adult with CF, and a parent of a person with CF. The Committee reviews educational material for accuracy, adherence to CF Foundation guidelines, and applicability across all care centers. The resources include:
You can find these resources in the Education folder in the resources section of PortCF.
Educational videos on various topics like infection prevention and control, mental health, nutrition, and more are available on the Cystic Fibrosis Foundation's YouTube channel. It is another resource that you can use with your patients and families.
Visit the CF Foundation's booth at NACFC to see these resources in hard copy. 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.
To learn more about educational resources offered by the Cystic Fibrosis Foundation, email email@example.com.
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