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.
For the first time, the Cystic Fibrosis Foundation invited non-CF experts to its annual research conference to meet with CF researchers. The conference --
New Technologies Advancing Toward a One-Time Cure
-- in Savannah last month focused on the challenges being faced in gene editing, gene delivery and stem-cell biology and laid the foundation for new collaborations.
Katherine Tuggle, Ph.D.
July 25, 2016
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When the Cystic Fibrosis Foundation first set out to find and develop
in the late 1990s, researchers were optimistic but weren't quite sure whether this strategy would work. Although this research eventually led to the development of ivacaftor (Kalydeco®) and lumacaftor/ivacaftor (Orkambi®), the development of these medications was hardly guaranteed.
You may not follow science, but it's hard to escape the sunny news about gene editing these days. Although many of these stories highlight the amazing technology and its potential to change the lives of many living with genetic diseases, these stories don't often go into what it will take to turn these technologies into treatments.
As we have been discovering, it's going to take a lot of collaboration among many disciplines to discover a way to correct the
cystic fibrosis gene. Not only do we have to perfect the gene editing technology, we have to find the right vehicle to deliver it to the right cells in the lung.
That's why we decided to bring together researchers from the worlds of
gene editing, gene delivery and stem-cell biology with long-standing CF researchers for a
New Technologies Advancing Toward a One-Time Cure.
Researchers tend to be very specialized and focused primarily on the intricacies of their research. So we organized the conference in Savannah, Ga., in a way that brought scientists with these different backgrounds into one room so they could begin to learn more about these other topics and where they have the potential to complement or overlap with each other. Instead of picking from a menu of multiple presentations, everyone went to the same presentations together in the same room. They ate breakfast, lunch and dinner together. They looked at each other's poster presentations, learning about their latest findings.
In the process, they learned what barriers each field faces and how those barriers could affect what they are doing and talked about ways to overcome those obstacles.
For example, gene delivery researchers are perfecting ways to deliver gene editing tools into cells using viruses that are harmless to humans. Some of these viruses, however, are too small to carry the tools needed to edit the CF gene. Picture trying to carry a couch in a Mazda Miata.
By learning about the size issues early in the process, gene delivery researchers can find a virus that is large enough to handle the load or
researchers can develop smaller tools.
As these fields advance in parallel, it is also important for the stem-cell biologists to speak with the gene delivery researchers so they can make sure that the delivery vehicles can target the right cells in the airway. All of this knowledge will have to come together when the tools are ready to be tested.
We scheduled an afternoon to enable like-minded researchers to discuss specific topics and to prioritize research questions that should be addressed in the short term. They also could identify potential barriers to developing these technologies into new therapies for people with CF.
Following these small group discussions, we brought the entire group back together to review the smaller discussions and to get input from others. By the end of the meeting, I overheard numerous conversations about new collaborations because people found out about a technology or research approach that they wanted to integrate into their program back home.
As people left the meeting, there was a sense of excitement and energy that I had not previously felt. I'm told this feeling is reminiscent of the research conferences in which CFTR modulators were first discussed. In Savannah, there was a general feeling of "we can do it," and these are the people who can make it happen.
Now it's time for us to get to work.
Katherine Tuggle, Ph.D.
Director of Research, Cystic Fibrosis Foundation
Katherine has been involved with CF research since 2009 as both a graduate student and postdoctoral fellow at the University of Alabama at Birmingham. In 2014, she joined the Foundation to oversee its basic science research programs, including the 11 basic science research centers around the country. She is also involved in a number of Foundation initiatives focused on developing and validating model systems that may be used for personalized medicine. In her free time, Katherine enjoys traveling with her husband and spending time with her German shepherd.
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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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