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.
For people with cystic fibrosis, our story is the most powerful tool we have to stand up for ourselves and fight for our needs. Although I can't always be there to share my story with legislators in person, I'll be joining many others from the CF community for our first March on the Hill Online Day of Action to make my voice heard.
March 8, 2018
How One Conversation Led Me to Being More Intentional About My Life
How Everyone Can Be a Part of VLC
Starting from when I was very, very little, I've always had to answer questions about my disease: Why was I using an inhaler on the playground, or taking pills in the lunchroom, or coughing like a madwoman? You're constantly doing something odd when you
have cystic fibrosis, so questions are inevitable.
I have learned to answer them proudly.
There is a noticeable reaction when someone finds out you have CF. They never expect it, since CF patients are an extremely attractive bunch. Some people process it right away and you can see that realization, which is usually a mix of surprise and sympathy.
Other people need to see the pills, and the nebulizers, and the … you know … phlegm.
But when they get it, I love seeing the expression on their faces. Because other than shock -- and yes, sometimes pity -- there is something else. You see respect. They recognize your strength -- that inner grit that has allowed you to survive this far.
I call these exchanges “woah, CFers are tough cookies” moments (WCFATC). And these moments are proof that telling our CF story works.
Naturally, my urge to tell my story got me into advocating for the needs of the CF community. I love to stand up in front of doctors, students, philanthropists, and anyone else who's interested in
my disease and tell my story. For people with CF, our story is the most powerful tool we have to stand up for ourselves and fight for what we need.
I've gone to Washington, D.C. several times with the Cystic Fibrosis Foundation to tell that story. I've told my story at a congressional briefing, a mock
senate hearing (for the launch of the Senate CF Caucus!), and at the 2016 Teen Advocacy Day.
Every time I went, I witnessed a bunch of those WCFATC moments when I shared my experiences with members of Congress and their staff. It's empowering to talk to legislators. It's an incredible feeling to know they'll enter their next congressional debate
on health care with your story in the back of their mind.
But, as an advocate, I can't always be in Washington, D.C., or at my state capital. And we can't wait until we meet with a legislator in person to make our voice heard.
This year, I won't be in Washington for March on the Hill, but that doesn't mean I can't help fight for the needs of people like me.
On March 15, I'll be joining many others from the CF community for our first March on the Hill Online Day of Action by
giving my members of Congress a good old-fashioned phone call.
That's right, Washington; All the way from Connecticut, I can still bug you!
I’ll also be promoting our efforts on my social media accounts. Members of Congress watch social media closely to see what people are talking about, so tagging them in your posts is an easy way to make sure they hear you.
Advocating remotely is a phenomenal opportunity for everyone in the CF community and something that I’ve always been passionate about. And I hope everyone with CF and their families will join me in calling their members of Congress on March 15.
As more than 100 CF advocates converge on Capitol Hill that day, we can help amplify our message and make sure every office hears our voice and knows what we need. While members of Congress are talking face-to-face with people fighting for adequate and affordable CF care, we’ll be calling into their offices too. With our help, everyone on Capitol Hill will hear us that day.
Whether you call your member of Congress every day or have never done it before, now is the time to step up and join the 2018 March on the Hill Day of Action. Signing up is easy: You just need to click here, enter your information, and the Foundation’s advocacy team will send you more information as March on the Hill gets closer.
I’ve found that you still get those WCFATC moments when you tell someone about your experience with CF -- whether you’re a person with CF or one of their loved ones. So, make a call, snap a picture, take a video, or write your story, and share it with the people who make a difference.
Please join me and advocate in Washington from afar. Let’s share our story. Cheers to our first March on the Hill Online Day of Action!
Adult with CF
Mara has been living with CF for 24 years. She recently earned her master’s degree in public relations and hopes to continue her work in health communications. In her spare time, she loves reading, baking, and spoiling her dog, Zoe.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails