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 Egan family, currently featured on the homepage of CFF.org, share more about their sassy little girl, how much their support system means to them, and what inspires them in the search for a cure for cystic fibrosis.
July 6, 2017
Looking for Answers When I Don’t Know the Questions
Why I Believe in Teen Advocacy Day
What is one thing everyone should know about Lilian?
She is living proof that what the Cystic Fibrosis Foundation is doing is working. Early diagnosis, intervention, and the continued scientific advancements can allow for a normal life. She is a sassy, clever, active, and funny little girl who happens to also have cystic fibrosis. (Full disclosure: When we asked Lilian this question, her response was, "That I am, like, a very big girl, and can I have some muffins?")
Who does Lilian look up to?
Without a doubt, her brother Connor. Wherever Connor is, Lilian isn't far behind. It's not easy to have a little sister who is 6 years younger than he is, but Connor is unbelievably patient and kind -- even when Lilian is doing her best to annoy him.
From Connor's perspective, what is the best thing about being Lilian's brother?
“I like to teach her things and she is funny.”
Who are the most important people in your support system?
How could we possibly list them all? We are incredibly lucky to have family both near and far, with everyone taking on different roles and providing support. Some are researchers, some are cheerleaders, some are listeners, some are fundraisers (and some are all of these!) … but all provide humor, perspective, and love.
We are very lucky that Brian's parents, Tom and Cathy Egan, and his youngest sister, Emily Egan, live near us and are near-daily fixtures in our lives. After Lilian was diagnosed, Tom and Cathy largely put their lives on hold and offered to care for Lilian when Brian and I returned to work. The generosity and love of our family -- and friends who are like family -- is amazing and humbling.
As her parents, what is your proudest moment?
It's so fun to see how much she loves being Lilian! (And, she really loves being Lilian!) She wants to go faster, higher, harder. Whatever we are doing (riding roller coasters, riding bikes, swimming), Lilian wants MORE out of the experience!
Is there anything else you'd like to share with the community?
It is not lost on our family that Lilian's excellent health is the direct result of many years of other people's hope and hard work -- fundraising, spreading awareness, participating in clinical trials, research, and more.
Lilian lucked out by being born with a combination of mutations that so happen to be positively affected by new drugs, and we are so grateful for this. It inspires us -- and our community -- to do what we can to contribute to a healthier, longer, and brighter future for everyone with CF.
Former Digital Content Manager, Cystic Fibrosis Foundation
Ashling previously worked at the Foundation as a digital content manager. She helped keep the Foundation's website and blog up to date with news and information that's important to the CF community. Ashling first got involved with the Foundation through Delta Phi Epsilon sorority at York College of Pennsylvania, where she earned her B.A. in public relations. Originally from New Jersey, she now lives in Pennsylvania with her husband, son, and two dogs.
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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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