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.
Abigail was diagnosed with cystic fibrosis at almost 3 months old. She has lived in Charlotte, N.C. most of her life and recently moved to Raleigh, N.C. to attend school. When she isn't hooked up to her vest or nebulizers, she enjoys knitting, sewing, baking, and watching movies with a big bowl of buttery and extra salty popcorn. Abigail has a CF mini series on Odyssey, in which she chronicles daily life with CF and things she has learned or would like to share with others about the disease. You can also follow her on Twitter @abbychansen.
Aimee is a nutritional therapy practitioner and registered yoga teacher. She was diagnosed with CF 32 years ago when she was 2 weeks old. In addition to CF, she has endometriosis and has had two surgeries for scoliosis that involved spinal fusion and the placement of metal rods. Despite her many health challenges, she continues to live life to the fullest and look for the positive in every moment. Aimee has a continued passion to help others live a life that supports better overall health, especially those within the CF community. She resides in Salt Lake City with her husband, two pugs, and a cat. You can find more about what she's up to at www.thenourishedbreath.com and on Instagram @thenourishedbreath.
Dr. Alexander Elbert is the senior director of the Patient Registry program at the Cystic Fibrosis Foundation. He received his degree in Chemical Engineering from Igor Sikorsky Kyiv Polytechnic Institute and Ph.D. in material science from the Institute for Superhard Materials. Dr. Elbert designs and maintains the CF Patient Registry data forms and ensures the quality of the registry data. He is also a part of the team that produces the CF Registry annual reports and manages the online registry reporting tool for clinicians, CFSmartReports. A fan of the Washington Capitals, he hopes to see Alexander Ovechkin raise the Stanley Cup soon!
Ali has been a CF advocate for most of her life, raising funds with her family for Team AliKatz. She and her husband, Austin, are on the Cystic Fibrosis Foundation Tomorrow’s Leaders board in Portland, Maine. Ali also works full-time for MamaSezz, helping people feel and eat better with plant-based meal delivery. She’s a graduate of the T. Colin Campbell Plant-Based Nutrition Certificate Program. She lives on the coast of Maine with Austin and their best friend/dog, Sally. Connect with her on Instagram or her blog.
Amanda has been fighting CF since she was diagnosed at 6 months old. Originally from central New Jersey, Amanda has been living and working in New York City for the past six years. She is a proud graduate of Syracuse University, where she earned degrees in public relations and psychology. After college, Amanda began working at a boutique public relations firm where she capitalized on her love of food and the hospitality industry. Amanda has now parlayed her work-life balance to freelance PR consulting, where she enjoys exercising her creativity with lifestyle and hospitality projects. Follow @gaynorface on Instagram, or contact Amanda directly at firstname.lastname@example.org.
July 2017 -- We were deeply saddened to learn of Amanda's passing. Amanda opened her home to us for a photography shoot in 2016, and her heart to the CF community through our blog. She will be missed by many.
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