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 Therapeutics Lab conducts groundbreaking CF research to rapidly advance new therapies.
The Cystic Fibrosis Foundation created its own research laboratory in 2012 to help expedite early discovery of drugs that could correct or improve the function of the defective cystic fibrosis transmembrane conductance regulator (CFTR) protein.
In 2016, The Foundation moved the Cystic Fibrosis Foundation Therapeutics Lab into a new 20,000-square-foot, custom-built facility in Lexington, Mass., with four tissue culture rooms, a cell bank room, and a lab for radioactive work. It is furnished with more than $2 million in the latest scientific equipment.
In the new space, the lab added gene editing and lung stem cell biology to the areas of active research. More than half of the lab's work is now dedicated to identifying promising drugs for rare mutations of the CF gene, in particular nonsense mutations, which prevent CFTR protein from being produced.
To seek out new and better therapies, the lab capitalizes on emerging scientific discoveries related to CFTR modulators, nonsense mutations, gene editing, and stem cell research. The lab devotes about 70 percent of its activity to original research, with the remainder centered on developing resources for the rest of the CF scientific community, as well as generating data for other groups that are working on potential CF therapies.
The CF Foundation Therapeutics Lab tests drug-screening tools and technologies and, when promising, develops them further to make them available to other researchers. In addition, the lab team trains external researchers who need specialized help in developing CF therapies.
A key area of focus for the lab is screening chemical compounds to identify the starting points for potential medicines that can help people with all types of CF mutations, with a special emphasis on rare and nonsense mutations.
DID YOU KNOW? The 2016 budget was more than $6 million.
Although the majority of individuals with CF have at least one copy of the most common mutation, 5 percent of people carry only nonsense mutations and other types of rare mutations that do not produce CFTR proteins -- and, therefore, would not respond to modulators without a therapy that addresses protein production.
Building on the lab's expertise in cell culture, gene editing, and stem cell research, the lab's scientists are spearheading a new initiative to collect and grow cells from people with CF who have nonsense and other rare mutations. These cells will be critical for identifying treatments for rare mutations, and they will be made available to expedite the development of new treatments.
With an eye on a one-time cure for CF, the Foundation has begun exploring the use of gene editing and induced pluripotent stem (iPS) cells. iPS cells are adult stem cells that scientists genetically reprogram, enabling them to potentially become any cell type in the human body, such as lung cells, heart muscle cells, or nerve cells.
Although much has been learned about stem cells in recent years, it is not clear how they can be used for treatments in the lungs. It is therefore critical to better understand stem cell populations in the airways if we are to advance to the stage of repairing the defective gene by implanting healthy lung stem cells into the lungs, or removing CF lung cells, repairing them, and then putting them back into the body.
As such, stem cell and gene editing research must be conducted in tandem. To capitalize on these emerging technologies, the CF Foundation Therapeutics Lab has hired both gene editing and stem cell biologists to work together to explore and advance new treatments and to get us one step closer to our ultimate goal of a cure.
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