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.
There have never been as many new CF drugs in development as there are today. In the second plenary at NACFC, Dr. George Retsch-Bogart outlined the progress we've made, the road ahead and the changes needed to make it all possible. Read on for my key takeaways.
October 9, 2015
There Is No Health Without Mental Health
The Future of Personalized Medicine
I came away from the second NACFC plenary, “Opening Doors to CF Clinical Research: Change Is Coming,” in awe of how far we have come in clinical research and excited about what is coming in the next year.
George Retsch-Bogart, M.D., a pulmonologist at the University of North Carolina and faculty director of network development at the CF Foundation's Therapeutics Development Network, started his talk with a moving clip of Linda Bowman, a 54-year-old with CF who began participating in clinical trials before the first CF drug, Pulmozyme, was approved. Linda reminds us all why clinical research is so important: It has added years to the lives of thousands of people living with CF.
Developments in clinical research mean that someday soon people with CF will simply expect to grow old; our hope for a cure will become their reality. Dr. Retsch-Bogart described how doors are opening in CF research, and progress is being made not only in disease-modifying drugs like Kalydeco™ and Orkambi™ but also in treatments to help people with CF manage the symptoms of their disease, like treatments for MRSA infections and best practices for pulmonary exacerbations.
This has been a year of unprecedented growth in CF research. Almost three times the number of new studies have started up this year than in previous years, with 38 major studies underway and a pipeline full of innovative approaches to treat the symptoms and underlying cause of CF.
What will it take to perform these clinical trials? The latter half of the plenary shifted focus from the trials themselves to what could be the most challenging aspect of carrying them out: increasing participation in CF clinical research. Even with an outstanding network of research centers, participation of people living with CF in clinical research is at the heart of moving research forward.
Dr. Retsch-Bogart shared results from a survey of people with CF and their families about their needs and preferences around clinical trials, such as wanting to hear directly from their doctor about whether a clinical trial is right for them.
He also discussed the importance of making it possible for all people to participate in research studies even if they are not taking place at their care center. In another video, Dr. Susanna McColley and Ryan Maguire, the parent of a 6-year-old with CF, talked about the experience of being referred to another center for a clinical trial, illustrating the importance of collaboration between care centers.
Now more than ever it will take the entire CF community to help move clinical research forward. Change is coming in clinical research, and with that change comes the promise of new therapies for all people with CF, turning the hope of a vibrant future into a reality.
If you did not have the chance to watch this plenary live, watch a recording of the second plenary here.
Community Engagement Manager, Cystic Fibrosis Foundation
As community engagement manager for the Cystic Fibrosis Foundation, Christina works to help embed the voice of the community into the work of the Foundation. Before joining the community partnerships team Christina worked on the clinical trials team for 3 years and at Colorado Children’s Hospital for 2 years supporting the CF team. She holds a master's degree in public health from the University of Colorado. Originally from Estes Park, Colo., Christina now lives in Washington, D.C. with her husband.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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