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.
Packing for vacation or arranging your staycation to-do list? Put these summer reads in your beach bag or by your nightstand.
July 12, 2017
Celebrating My 30th Birthday With a 24-Hour Fitness Challenge
Looking for Answers When I Don’t Know the Questions
When I was asked to write this post, I have to admit I did a little happy dance at my desk. Combine the cystic fibrosis community and books -- two of my favorite things? Yes, please! And this list was born: five summer reads I can vouch for myself.
When a group of executive assistants at a media company come up with a get-rich-quick scheme to pay off their student loans, things spiral out of control -- fast, and with an outcome they never anticipated. Perri's debut novel (and recently released in paperback) is the perfect summer read: fast-paced, addictive, and fun. I devoured it in two days, a feat for me, and I am urging everyone to add it to their TBR (to-be-read) list. It's the perfect book for your beach bag, to pass the time while in the hospital, or to just make you feel good.
Set in the 1970s, Everything I Never Told You follows the Lees, a Chinese-American family living in a small Ohio town. When tragedy strikes, secrets are revealed, throwing each of them into chaos. Trust me, the less you know, the better. This was one of my favorite books of 2015. Fans of contemporary family dramas will be hooked from the first page. (Psst, her upcoming book, Little Fires Everywhere, comes out in September and sounds every bit as gripping.)
Whether you're going on vacation or not, The Vacationers is the perfect read for summer. The Posts are off to Mallorca in celebration of their 35th wedding anniversary and their daughter's high school graduation. When they decide to bring along family friends, they don't realize they're also bringing along a whole lot of drama. This story will have you laughing, rolling your eyes, and feeling all the feels.
At just 63 pages, Dear Ijeawele, a letter Adichie penned to her friend on how to raise a feminist daughter, packs a punch. In her 15 Suggestions, Adichie, known for Americanah and We Should All Be Feminists, includes gems such as, “Your feminist premise should be: I matter. I matter equally. Not 'if only.' Not 'as long as.' I matter equally. Full stop.” Known for her ability to approach controversial subjects with grace and honesty, this short book should be on everyone's list. (New parent in your life? This is the perfect gift.)
I'll admit -- I'm not a huge science fiction reader. So when a friend suggested I read Ready Player One, my first instinct was to smile politely and move on. But in the interest of stepping outside of my comfort zone, I decided to give it a go -- and I'm glad I did. Cline's novel takes place in 2044, where our world looks much different thanks to a global energy crisis. As an escape from their dystopian society, people turn to OASIS, a virtual reality simulator. We follow Wade Watts on his adventures to find an Easter egg hidden inside this game. If sci-fi isn't your thing, I recommend you give it a try anyway (and if you do, let me know what you think!).
Want to see what else I'm reading? Follow me on Instagram at
Adult with CF
Katharine was diagnosed with cystic fibrosis at the age of 16. A graduate of Denison University with a degree in English, she now has a successful career in communications. As a CF advocate, Katharine speaks at events sharing her story, serves on the CF Foundation’s Adult Advisory Council and is a board member for the Maryland CFF chapter. For her efforts as an advocate and fundraiser, Katharine was named one of the “Top 10 to Watch Under 30” by the Baltimore Sun and a Maryland’s Finest honoree. In her free time, Katharine enjoys reading, traveling with her husband Mike and eating locally. You can find Katharine at From A to Pink and The Bookly Club. Follow @katharinescriv on Twitter and @katharinescriv on Instagram.
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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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