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 CF Learning Network (CFLN) held a Community Conference in Long Beach, Calif., in November 2018 where teams were able to plan their work for the network's transition from its pilot phase to a three-year implementation phase, which began earlier this month.
Published on January 23, 2019
In November 2018, the CFLN held its fifth Community Conference in Long Beach, Calif., where 160 representatives from 27 care teams -- including 10 patient partners -- learned from one another on topics such as emotional wellness, pediatric nutrition,
food insecurity, inpatient care, pre-visit planning, partnering with patients and family members, and more.
Guest speaker Uma Kotagal, MBBS, MSc, kicked off the conference by sharing her experiences with improvement at Cincinnati Children's CF Center, scaling improvement results in a learning network, and closing the gap for vulnerable populations in health
care. Teams also shared their work toward improving the FEV1 -Indicated Exacerbation Signal (FIES) measure during a poster session.
Our next Community Conference will be in May 2019 in Washington, D.C.
Over the past three years, the CFLN has been undergoing a pilot phase at 27 CF care centers. With the pilot learnings in place, the program is now transitioning to a three-year implementation phase beginning this month, which will focus on improving key
outcomes; maturing CFLN processes; and integrating real-world research, clinical care, and quality improvement. Guided by the Key Driver Diagram (KDD) below, the CFLN intends to learn more efficiently as a network by testing a portfolio of changes
in a coordinated manner across programs.
To accelerate improvement in these key outcomes, the CFLN will recruit additional teams in late 2019 in addition to spreading best practices from the CFLN to the larger care center network.
The CFLN is also learning how to test innovations and integrate them into clinical care through two different 180-Day Challenges. The challenges are an opportunity for a small group of teams to focus intentionally on just one initiative over the course
of 180 days in order to make lasting improvements at a quicker pace. The current 180-Day Challenges involve Patient-Reported Outcomes (PROs), or the 5 Ways to Partner in CF Care handouts in conjunction with the Cystic Fibrosis Foundation's Partnerships
for Sustaining Daily Care (PSDC) program.
The teams participating in the PRO 180-Day Challenge will learn how to select, collect, and use PROs to develop plans between people with CF, their families, and CF clinicians. PROs -- specifically overall health, mental health, quality of life, trust,
satisfaction with progress toward personal goals, and treatment burden -- are a key set of outcomes that can significantly impact daily disease management.
Meanwhile, the teams participating in the PSDC 180-Day Challenge will learn how to deepen the relationships that matter -- those among individuals with CF, their families, and CF clinicians. When these relationships are nurtured, people living with
CF and their families can trust that their contributions will be both respected and encouraged, and that they can partner with their care teams to work toward personal goals while taking care of their health.
For more information about the CF Learning Network, contact the CFLN team at firstname.lastname@example.org or Michael Seid at email@example.com.
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