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.
Don't let the internet fire hose of CF information overwhelm you. As a mother to two children with cystic fibrosis, I can give you some tips on avoiding common pitfalls.
September 18, 2019
The Two Sides of Loneliness
Things You Shouldn’t Say to a Parent of a Child With CF
As a mom of two kids with cystic fibrosis, there are many reasons why I am thankful to live in 2019. Medical advancements, ongoing research, and groundbreaking medications that positively impact the CF community are at the top of my list; but there are
also smaller things I take for granted, like access to information.
Believe it or not, the world did exist without the internet, and just a few decades ago CF patients and parents had to rely on the good word of their doctors or medical journals to find out about CF care options. Today, we have message boards, Facebook
groups, online communities, news sites, and quick access to other CF patients and caregivers who feed us information in addition to the advice of our doctors.
It's nice to have these resources at my fingertips, but it can also be overwhelming, especially when information is conflicting. For example, I'll browse a Facebook group and see a picture of kids doing treatments in a slightly different way than my kids'
doctors have prescribed; or I'll talk to a CF mom friend and find out her children are on different medications than mine; or I'll read an article about something I didn't even know was possible with CF, and I find myself down the rabbit hole of the
World Wide Web. So, how do any of us know where to go for credible information? That's for each of us to decide for ourselves. Here are the tips I follow for managing information overload and navigating the best care for my kids.
What are your tips for managing CF information overload?
Join the conversation on Facebook.
Mother of two children with CF
Originally from Nebraska, Erin lives in Nashville, Tenn., where she enjoys staying active and busy with her son Levi, daughter Carolina, and husband Ron. Erin works full-time in corporate communications in addition to writing on a freelance basis. She is passionate about CF advocacy and awareness, participating in year-round fundraising for the CF Foundation, and is a member of Community Voice. In their free time, Erin and her family love traveling, sporting events, and spending time outdoors, all while fitting in her children's daily CF treatments.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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