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.
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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.
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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.
As a mother of two children with cystic fibrosis, I am glad to hear that the Cystic Fibrosis Foundation is launching the Infection Research Initiative to address the chronic infections that dramatically impact the lives of people with CF.
October 18, 2018
Significant Progress Has Been Made in Inflammation Research
Anxiety: How It Affects More Than the Person With CF
Infections are a huge part of life with cystic fibrosis, and they can cause a lot of anxiety for people with CF and their families, said Tré LaRosa, in a video played during the first plenary today at the North American Cystic Fibrosis Conference in Denver.
Those words resonated with me as a mother of two children with CF. Somewhere in the back of his mind, Tré worries that the next infection could be the one he won't be able to recover from. This fear stems in part from the loss of his sister, Alyssa, to CF in March despite two lung transplants.
“Seeing what my sister went through and knowing that at any point, it's possible that I might not respond to the antibiotics, that is something that does scare me a lot,” Tré said in the video shown to an audience of more than 5,000 clinicians and researchers.
That scenario concerns me, too. That is why I am so excited that the Cystic Fibrosis Foundation is dedicating at least $100 million over five years for the new Infection Research Initiative. Lisa Saiman, M.D., MPH, a professor of pediatrics at Columbia University Medical Center, discussed the objectives of the initiative during her plenary address, Improving Outcomes of Infections in the Age of CFTR Modulators.
Dr. Saiman said the initiative is focused on six key areas of research that have been selected with input from people with CF and their family members:
I like the initiative because it is truly comprehensive and touches on topics that I care about as a mother and someone who will be working on the initiative at the Cystic Fibrosis Foundation.
There's so much more to infections than just the development of new drugs. For example, are we detecting microorganisms (such as bacteria, viruses, and fungi) before they do much damage? What are the effects of long-term antibiotic use? Will my children's infections change once the triple-combination modulators are available, and they can take them?
Dr. Saiman built her speech around the focus areas of the initiative, including how the initiative will build upon the breadth of research that is already underway. She discussed the challenges of treating infections in people with CF, the results of ongoing work to improve our understanding of CF microorganisms, and strategies to develop new anti-infectives for the future.
The main message of the plenary was that despite the advent of CFTR modulators, people with CF are going to need effective treatments for infections and other complications.
People who can take modulators will require treatments for lung damage, and we don't know how they will affect infections, for example, Dr. Saiman said. In fact, we don't know all the implications of current anti-infectives on the CF lung microbiome. Researchers are increasingly focused on the interactions between these bugs, like how killing off one could allow something more dangerous to become dominant. A doctor needs to consider all these factors when deciding whether to treat a positive culture of bacteria.
Although some microorganisms common in people with CF are decreasing, others such as nontuberculous mycobacteria (NTM) are increasing. Dr. Saiman talked about studies such as PREDICT and PATIENCE, which aim to create standard ways to diagnose and treat NTM, and the formation of a consortium of participating study sites that could accelerate future NTM clinical studies.
Dr. Saiman talked about the STOP 2 study, which is looking at the duration of intravenous (IV) antibiotic treatment during pulmonary exacerbations to determine a standard treatment time. Optimizing current treatments like this is a big win for me as a mom. I'm never sure whether having my children stay on antibiotics longer is better than trying a different antibiotic altogether when they have a stubborn infection.
Another pet peeve: throat swabs! I know they are effective in getting samples to test for bacteria, but I hated the trauma my kids went through as toddlers when they had to get them. I'm looking forward to rapid diagnostic tests under development that could detect bacteria types in a patient's breath. Dr. Saiman said that earlier identification from point-of-service tests like this could help manage exacerbations more quickly.
Dr. Saiman also updated us on the current approaches to fighting infections: borrowing treatments from other infectious diseases and conditions, altering existing anti-infectives to inhaled versions, and developing drugs that fight infections in novel ways. For example, she talked about a drug in a late-stage clinical trial that works on breaking up biofilms. Researchers believe the drug will make bacteria more susceptible to antibiotics.
The Foundation has funded 12 infection-related programs that are in various stages of development, and they are in talks with 17 additional companies about other potential drugs, Dr. Saiman said.
A lot still needs to be done to fight CF infections, but she closed her talk by saying she was optimistic because of the “unbelievable tools” that CF researchers have in their toolbox, including highly motivated people with CF and their families, deeply caring clinicians, international collaborations, and funding.
Tré said that knowing that the Foundation is prioritizing infections gives him hope. It gives me hope, too, for my kids, Penelope and Maximilian, and everyone else with CF out there.
Watch the full plenary below.
In Plenary 2, we learned what the Foundation is doing to treat excessive mucus and inflammation, two other complications that wreak havoc in people with CF.
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Director of Clinical Research Awards, Cystic Fibrosis Foundation
Dara is the director of Clinical Research Awards at the Cystic Fibrosis Foundation, where she has worked for almost two years. Prior to joining the CF Foundation, she was a science officer for the Congressionally Directed Medical Research Programs. Dara is committed to helping find a cure for her two children who have CF, Maximilian and Penelope, and actively fundraises for the Maryland chapter. She is also a member of the Family Advisory Board at the Johns Hopkins CF Care Center where her children receive their care. Dara lives in Frederick, Md., and in her spare time, she enjoys hiking and being outdoors with her husband, two children, border collie, and two cats.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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