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.
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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.
The Cystic Fibrosis Foundation invited more than 100 scientists to its research conference in Savannah, Ga., last month to discuss recent advancements in gene therapy, gene editing and stem-cell biology and how these new technologies could be applied to finding a one-time cure for cystic fibrosis.
Published on July 21, 2016
In a first-of-its kind conference, the Cystic Fibrosis Foundation invited more than 100 scientists to Savannah, Ga., from June 26-29 to discuss how recent advancements in the treatment of genetic diseases could lead to a one-time cure for cystic fibrosis.
The main goals of the New Technologies Advancing Toward a One-time Cure conference were to encourage scientists -- from graduate students to senior-level researchers in gene therapy, gene editing and stem-cell biology -- to focus their research efforts on CF and to build collaborations that will be essential for developing future therapies. This conference is part of the Foundation's overall research strategy to support basic scientific research into the disease and to develop new therapies.
This was the first time that researchers and companies in these non-CF disciplines were collectively invited to participate in the annual conference and marks a commitment to developing new technologies that could repair or replace the defective CF gene.
"We are now sitting at the precipice of a tremendous opportunity in genetic technology," said William R. Skach, M.D., senior vice president for research affairs at the CF Foundation. "We need to convince researchers to focus on unlocking this potential for cystic fibrosis."
Katherine High, a pioneer in the field of gene therapy, opened the conference by providing insight into the process of developing and evaluating gene therapy, a therapeutic approach that inserts normal genes into cells to correct genetic disorders. High is the president and chief scientific officer of Spark Therapeutics in Philadelphia, a company that is conducting clinical trials for multiple gene therapy programs.
As the Foundation begins to explore these new therapeutic options for CF, designing ways to test their effectiveness in people is just one of the challenges that scientists at the conference identified. Researchers also need to know which cells to target, how to reach those cells efficiently and decide whether to repair or replace the gene.
"The CF Foundation will be inviting smaller groups of researchers to work on finding solutions to problems identified during the meeting," said Katherine Tuggle, director of research for the CF Foundation. She said the Foundation will also use knowledge gained at the conference to decide where to devote future resources.
Dr. Skach said that the conference reminded him of those in the late 1990s when researchers gathered to talk about the challenges and opportunities of developing CFTR modulators. Those discussions led to the development of ivacaftor (Kalydeco®) and lumacaftor/ivacaftor (Orkambi®).
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