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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
Each time we meet, I am reminded that quality improvement in CF care cannot happen without the insights of people with CF and their families.
Paula Lomas, M.A.S., RN, CCRP
April 22, 2016
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CF is a complex disease. Providing care requires the coordinated effort of a multidisciplinary team that includes a host of medical professionals and people with CF and their family caregivers. To provide the best care and produce the best health outcomes, people need to communicate best practices, both within teams and between teams. For more than 10 years, the Cystic Fibrosis Foundation has encouraged and financially supported the improvement work of care teams throughout the care center network. The Foundation has partnered with the Dartmouth Microsystem Improvement Academy on its curriculum, to help guide this process. Teams apply to join funded Learning and Leadership Collaboratives (LLCs) to become proficient in the quality improvement (QI) process.
Teams work independently with a coach and also meet virtually and face to face to share ideas and quality improvement tools. During each LLC, teams benchmark practices, meaning they visit a high-performing care center to observe its clinic flow and processes and identify best practices. This week, I attended the face-to-face meeting in Boston with the team I am fortunate to coach. We were excited to learn from the pediatric and adult teams at Boston Children's and Brigham & Women's Hospitals.
That's only half the story though. A disease as complex as CF requires that people with CF and their family caregivers become experts on their own bodies and their own care. Providing high-quality care to people with CF is only possible when we make people with CF and their families full partners in their care. That's why care teams have always incorporated the voices of individuals with CF and their families as part of the improvement work.
Each care team has at least one person with CF or a family representative on their team. This strong partnership between care providers and those they care for facilitates the improvement of care delivery and ultimately, care outcomes.
I was most excited about the session for individuals with CF and family members, which another QI coach and I facilitated. We met with this group at our last face-to-face meeting, and they enjoyed networking with one another so much they asked to meet again at this meeting. We met virtually for pre-planning, and they decided that for family members, it would be a good idea if they brought two items with them for the two-hour meeting:
The family members enjoyed helping and encouraging each other along this journey. It is a way that they can improve the quality of care they deliver at home!
There also was a session in which the voice of this group could be shared with care team members. It helps care teams to hear from individuals with CF and their families about their lives, struggles and perceptions. This year, the group provided a range of experiences reflecting multiple aspects of life with CF.
One mother discussed daily life in her home. A grandfather shared his experience with a pediatrician who did not understand CF. One of the mothers in attendance, who also had two siblings with CF, shared that experience and perspective. And another mother related an emotional experience of how she is working through the transition of care with her pre-teenage daughter. Care teams were engaged and impressed by this family participation and transparency. The session proved to be very powerful and moving.
It is always encouraging to see all the improvement work that we accomplish over the two-day period and to see the teams share graciously -- and steal shamelessly from one another! The patient and family participation in this process, though, is the key to improving the quality of care delivered and received at care centers.
Paula Lomas, M.A.S., RN, CCRP
Director of Clinical Communications, Cystic Fibrosis Foundation
Paula has 26 years of experience working with children and adults with CF and their families in the role of nurse coordinator. She has also been a research coordinator for various CF clinical trials. Paula is a credentialed quality improvement coach and an advisor for the CF Care Model Design Project, and is passionate about improving care delivery.
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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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