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 care team at Children's Healthcare of Atlanta and Emory University used a value-based argument to gain support from administration to explore long-term institutional funding for mental health care while drawing on philanthropic funding.
This is the third in a series of articles that highlights how care centers are working to sustain mental health as part of specialized cystic fibrosis care.
The pediatric team at Children's Healthcare of Atlanta and Emory University embedded mental health coordinator, Shaina Blair, LCSW, into the team in 2016 to offer screening and care for anxiety and depression. Knowing that the Cystic Fibrosis Foundation Mental Health Coordinator Award, which initially underwrote the mental health coordinator role, was time-limited, Center Director Rachel Linnemann, MD, sought other funding sources as well.
To sustain the center's ability to provide mental health screening and care, the team began preparing for the expiration of the CF Foundation grant funding via quarterly meetings with key institutional leaders about mental health sustainability. Blair said, Dr. Linnemann, “continues to make a strong value-based argument around the need for mental health care in a way that aligns with our organization's broader mission” in making the case for salary support.
At the same time, the team contacted the organization's funding and development department and secured philanthropic giving for mental health coordinator salary support. The combination of grant and philanthropic funding and use of a no-cost extension helped the team stretch grant funding beyond its initial expiration to sustain the mental health coordinator role.
Blair attributes having a center director, “who values the mental health coordinator role and is committed to keeping mental health as a part of every big picture conversation about CF care with administration” as an important factor in sustaining mental health services in their center. She also cited the contributions of William “Randy” Hunt, MD, center director of the adult CF program at Emory University. Advocating for support from leadership has involved:
The team intends to continue the multi-pronged approach to fund the mental health coordinator role until it is a permanent part of the care team while also integrating mental health further into CF care. In 2019, Blair began offering tele-behavioral health sessions to CF adults to increase overall utilization of mental health services within the center's adult program. Blair says that mental health care is, “more seamless now, but it has been a gradual shift over the years. It now feels like a natural part of CF care.”
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