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.
Trusting, collaborative partnerships among care teams, patients and families are critical to helping manage daily cystic fibrosis care. Through storytelling, our community will learn about the key elements supporting these relationships.
2016 North American Cystic Fibrosis Conference (NACFC), the
Partnerships for Sustaining Daily Care (PSDC) initiative kicked off a national dialogue of storytelling to understand how care teams define a care partnership.
Within every care team member lies a memorable moment when partnering with their patients and families led to creating a treatment plan together, also known as co-production. Memories of these moments can offer an opportunity for self-reflection; what about that encounter allowed you to partner? By sharing your story, you can inspire others to reflect on their own partnering experiences and how they can deepen their relationships with their patients and families.
Here are a few snippets of stories shared by our care teams:
"One memorable 'aha' moment that I recall was with a teenage girl with low body mass index (BMI). Although various team members provided nutrition counseling to increase calories and talked about the benefits of weight gain, there were no improvements over time. It occurred to me one day that this older teen probably was having trouble envisioning herself weighing 15 pounds more than her current weight. I put myself in her shoes and thought, 'What if my doctor told me to gain 15 pounds?' It really was an eye opener to think about what that meant and what I would look like."
"I had a patient who wasn't very good about taking her medications. She always came to clinic and said she was taking her medications as she was supposed to. One day, she was admitted in the hospital and I just went in and asked her how things were going. She told me she had a lot of access issues with no car and not many family members who could take her to the pharmacy. Hence, she was having trouble getting her medications and wasn't good about taking them even if she wanted to. We set her up with our hospital mail order pharmacy where they would send her a 3-month supply, and that ended up being a huge moment for us to get rid of a barrier she was embarrassed to talk about."
If you have experienced a similar moment where you felt like you partnered in care, please share your story by emailing
PSDCteam@cff.org or learn more about the
PSDC strategic initiative.
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