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.
We're spotlighting five programs the CF community can join from the comfort of their own homes. From singing lessons to exercise programs, you can stay physically and mentally active and connect with others while physically distancing.
April 23, 2020
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On-Demand and Live Virtual Exercise Classes
From now through Labor Day, the Cystic Fibrosis Foundation is offering adults living with CF in the U.S. (ages 18 and older) free registration to Beam, providing them with unlimited access to on-demand workouts, live classes, community groups, and special events. Through Beam, you can connect with physiotherapists, instructors, and other people living with CF while exercising in a way that is fun for you. To sign up, click “Get Started” in the upper right-hand corner on the Beam homepage and navigate through the registration process. Once registration is complete you will receive a pop-up window to confirm that you have been granted free access from the Foundation. No promo code is necessary.
Virtual Youth Fitness Program
The Pulmonary Performance Institute is offering a free, three-week youth online training and conditioning program for children ages 7-14. The program features three 20 to 40-minute bodyweight workouts per week designed for all intensity levels, from beginner to advanced. Participants will receive detailed exercise videos, resources to track exercise progress, and tips to improve performance.
Chronic Disease Virtual Meetups
The Health Advocacy Summit is hosting virtual meetings every Thursday at 7 p.m. ET to connect young adults with chronic and rare diseases. If you'd like to chat with others going through similar experiences, email email@example.com for details.
Virtual Singing Lessons
Breathe Bravely's sINgSPIRE program provides individuals living with cystic fibrosis worldwide (ages 12 and older) an entirely virtual singing experience. By enrolling in sINgSPIRE, participants take part in a 10-week program of one-on-one weekly singing lessons taught by a professional voice instructor to improve both singing and respiratory strength. The next session starts June 2020.
In addition, beginning May 2, tune in every Saturday at 12 p.m. ET for the Sound of CF, a one-hour session for the community to write, learn, and sing a new song together.
Virtual Yoga Lessons
CF Yogi is offering free online yoga classes led by instructors who have firsthand knowledge of cystic fibrosis to improve strength and balance while relieving stress and anxiety. Classes are open to adults and children with CF as well as parents, caregivers, spouses, family, and friends.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Community Engagement Specialist, Cystic Fibrosis Foundation
Hannah is a community engagement specialist at the Cystic Fibrosis Foundation. In her role, Hannah engages with the CF community to develop content to support the Foundation's programs and manages the editorial calendar for the CF Community Blog. She has a bachelor's degree in public relations with minors in professional writing and business leadership from Virginia Tech. Outside of work, Hannah enjoys trail running, reading with a cup of coffee, and spending time with her family.
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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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