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.
Meet my son Kiran, a happy, charming and adorable 18-month-old with CF. We're telling his story this #GivingTuesday to raise awareness and funds for the CF Foundation. Donate today.
November 29, 2016
We Are Ready to Make Our Voices Heard
What We're Thankful For
Our son Kiran is a happy, charming and adorable 18-month-old. He and his fraternal twin, Raj, love to play at the park and spend time with our family and friends. They spend most of the day babbling to one another and playing with our dog, Franny.
In February of this year, Kiran was diagnosed with an incredibly rare mutation of cystic fibrosis. While they watch “Sesame Street,” Kiran has to strap on his vest for airway clearance and nebulizer to inhale medications. And while Raj digs into his breakfast, Kiran has to start with enzymes.
We know that we're lucky that Kiran was born in 2015, a time when research to treat CF is as progressive and remarkable as it is. And, every doctor we talk to is so positive, giving us hope that by the time Kiran is 20, living with this disease will be totally different. But, we won't be truly done with CF until the research results in a one-time cure for all, even those like Kiran, who have a rare mutation.
Some days are harder than others and there are days when Kiran's diagnosis still hits me like a ton of bricks. I never wished to be a part of this community, but most days I am filled with positivity for Kiran's future and his health because of this knowledgeable, supportive community and the CF Foundation.
What's important to me is that my twins have a similar life. I know that Kiran will have some additional struggles and that's something we've come to terms with, but in his life, I want him to do everything his brother can do -- have the same school experience, play the same sports -- I want him to have everything he wants for himself.
I know that all of this will be possible because of the Foundation and its work in advocacy, care and cutting-edge research. The Foundation means that my son, and many other kids like him, will see more tomorrows added to their lives. And that's why we need to continue to support their work by giving our time, talent and contributions.
As a mother who is looking out for her baby boy -- and for others in the CF community who have this disease -- I'm asking you to join me today, #GivingTuesday, and donate to the Cystic Fibrosis Foundation. Every donation matters.
Mother of a child with CF
Carolyn is mother to twin sons, Kiran and Raj. Kiran was diagnosed with cystic fibrosis before his first birthday. Raised in New Jersey, Carolyn moved to New York City after graduating from Hamilton College and works in schools as a counselor and learning specialist. Carolyn and her family jumped in to their first Great Strides walk in 2016, which was a wonderful success. She is happy to be a part of the Foundation and is always excited to get more involved. Carolyn lives with her sons, her husband Arvind Grover, and their dog Franny. They love to spend time outside as a family.
Share this Post
This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
Follow Us On
With more than 70 chapters and offices across the country, it’s easy to find and join a local Cystic Fibrosis Foundation chapter near you.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails