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.
The Cystic Fibrosis Foundation recently established an Epithelial Stem Cell Consortium that brings together investigators who will collaborate and share data to expedite the pace of CF-related stem cell research.
Building on the momentum in the field of stem cell research* and the goal of developing a one-time cure for cystic fibrosis, the Cystic Fibrosis Foundation has formed an Epithelial Stem Cell Consortium. The consortium brings together investigators who will work collaboratively and share unpublished, emerging data through regularly scheduled teleconferences and meetings to identify challenges in the field and develop research approaches to address these challenges.
Consortium members are charged with enhancing the research community's ability to identify stem cells and understand how they function in epithelial tissues as a means to developing therapeutic approaches that can cure CF. The primary focus of this consortium is on lung stem cells, but it will also include efforts to branch into other tissues, such as the gastrointestinal system and pancreas.
Members are encouraged to develop and share reagents and methodologies with the broader CF research community and participate in joint collaborations to advance research into the following priority areas:
Successful strategies to repair or replace the defective cystic fibrosis transmembrane conductance regulator (CFTR) gene will require the ability to identify and target endogenous stem and progenitor cell populations that have the regenerative capacity to effectively repopulate affected epithelial tissues. Targeting these cell populations will be essential for ensuring the long-lived or even permanent treatment of people with CF.
In addition to understanding the basic biology of these cells, a priority for this group is to develop reagents and tools for the research community, such as antibodies against surface lung stem cell markers, cell lines, and engineered animal models that can be used to identify target cell populations.
In addition to in-vivo correction, ex-vivo applications are also being evaluated for their therapeutic potential. Using this approach, stem or progenitor cells may be manipulated ex vivo to correct the defective CFTR gene and then administered to a patient where engraftment into the appropriate tissue will be essential. Engraftment is viewed as a key obstacle that requires epithelial cell migration to -- and survival in -- the appropriate location within the epithelial surface.
Studies to define and test engraftment efficiency, particularly functional engraftment, into the appropriate stem cell niche in animal models and human lungs are necessary. Additionally, studies on the in-vivo expansion of engrafted cells and their ability to differentiate into appropriate cell types to produce a normal and functional epithelium are essential. Common pathways of “lung damage” or “niche stimulation” injury models, decellularized model systems, and zip code biology will require careful consideration for use in a damaged and inflamed CF lung setting.
* The Foundation only funds research using adult stem cells.
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