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 Infection Research Initiative has been divided into six Areas of Research Focus to address chronic infections in people with cystic fibrosis. The initiative's steering committee has identified priorities in each of those six areas. Learn more about the initiative and what projects the Cystic Fibrosis Foundation is supporting.
In 2018, the Cystic Fibrosis Foundation committed at least $100 million over five years to the Infection Research Initiative as part of a sweeping effort to address the chronic and intractable infections that are a hallmark of cystic fibrosis. This initiative
builds upon the Foundation's already robust infection research funding and highlights the research priorities for the future.
The Infection Research Initiative will take a broad approach to improve outcomes associated with infections. This approach has been organized into six Areas of Research Focus, which are highlighted in the figure below. These six key areas of research
constitute a robust, comprehensive program developed after extensive input from people with CF and their family members, researchers, and clinicians. For definitions of each area, please refer to the white paper.
The goal of this initiative is to expand the existing research into CF infections with the mission of improving detection, diagnosis, treatment, and outcomes of infections for people with CF. The Infection Research Steering Committee -- made up of CF community members and experts in CF clinical care, research, and drug development -- identified key research priorities in each
of the six Areas of Research Focus. Below is the list of research priorities identified for 2019 (for the full list of priorities and context please refer to the white paper).
Researchers can apply to the Infection Research Initiative request for applications (RFA) with a proposal to address these priorities.
Companies may apply through the Therapeutics Development Award program.
The Foundation supports a wide range of infection research, covering key CF pathogens across all six Areas of Research Focus. The graph below breaks down the overall infection research portfolio into the percentage of projects that are focused on each
microorganism. Each microorganism bar is broken down further by focus area to show the spread of projects in the different focus areas. For example, in the “Developing New Treatments” area, the highest percentage of projects is for treatments addressing
multiple organisms, followed by nontuberculous mycobacteria (NTM).
The “Multiple Organisms” category includes research projects involving more than one organism (e.g., microbiome studies and studies that look at how microbes interact with each other), and treatments that have the potential to address more than one pathogen.
We will use this information as a baseline to compare ourselves against in subsequent years to see if we are able to expand research across the focus areas and into areas that have been identified by the community as priorities (e.g., fungal).
As of the end of 2018, there were 131 infection research awards, 55 of which were initiated in 2018. For a list of the academic-led infection research projects initiated in 2018, please refer to the Infection Research Portfolio 2018. The list includes the title of each project, the focus area, and types of microorganisms addressed.
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