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 regularly assesses its key research priorities to ensure we are on track to accomplish our mission to cure CF and to provide people with CF the opportunity to lead long lives. Applicants are encouraged to align submissions to these priorities to maximize their potential for being funded.
In late 2019, the Cystic Fibrosis Foundation released its five-year strategic plan. This plan is broken down into three key parts: Cure, Care, and Community. Most of the Foundation's research priorities center on tackling the first two components of this plan -- developing a cure for CF and optimizing care of the whole person with CF. The research priority areas below elaborate on the Key Areas of Focus outlined in our strategic plan. Each program and funding opportunity may further develop or define these broad areas, so please consult specific requests for applications (RFAs) for more detailed information.
Research Priority Area: Establish the necessary tools and knowledge to enable researchers to evaluate genetic-based therapies that may have clinical impact for people with CF
Research Priority Area: Advance therapies that address the underlying cause of CF for individuals with nonsense and rare mutations
Research Priority Area: Support the availability of novel cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapies and combinations to ensure that people with CF have robust treatment options
Related Links: Path to the Cure, PTAC Stem Cell Consortium
Research Priority Area: Address the fundamental and translatable knowledge gaps in lung epithelial stem cell biology to enable the development of genetic- and cell-based therapies for CF
Grant Programs Addressing These Priorities:
Research Priority Area: Improve outcomes of infections for people with CF
Related Topics: Infection Research Initiative, Lung Transplant Initiative/Advanced Lung Disease Program
Research Priority Area: Advance approaches to prevent and treat serious complications of CF outside the lungs
Related Topics: Mental Health, CFRD Survey, Therapeutics Development Network Women's Health Research Working Group
Research Priority Area: Improve understanding of chronic rejection following lung transplant with the goal of developing a prevention or treatment
Related Topics: Lung Transplant Initiative (Cystic Fibrosis Lung Transplant Consortium, Lung Transplant Consortium, Lung Transplant Patient Registry)
Research Priority Area: Improve understanding of inflammation, impaired airway hydration, and mucus clearance to advance new therapies for CF
Related Topics: Community-Generated Areas of Encouragement
Research Priority Area: Assess the feasibility and potential of linking novel data sources to the CF Foundation Patient Registry, e.g., administrative databases, patient-reported outcomes, wearables, and home monitoring.
Related Links: Patient Registry (Advanced Lung Disease Registry)
Research Priority Area: Characterize the best CF care and treatment regimens to provide optimal, individualized care as the CF treatment landscape evolves
Research Priority Area: Improve understanding of system-level and societal barriers to optimal CF care and explore opportunities to minimize their effects
Related Links: Success with Therapies Research Consortium
Research Priority Area: Ensure that the CF care model adapts to meet the future needs of people with CF across their lifespan
Research Priority Area: Sustain a culture of continuous learning and improvement in care across the CF community
Related Topics: Quality Improvement Efforts (Cystic Fibrosis Learning Network, Learning and Leadership Collaboratives)
Research Priority Area: Ensure that leading clinicians and researchers across a variety of disciplines continue to focus on CF and are equipped to address the changing health care needs of people with CF
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