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.
Over the last 10 years, I've gone from only interacting with local people with cystic fibrosis to joining hundreds of people with CF around the world to help build an incredible online community. This community has helped me through hard times, and I can't wait to see what we do next.
May 23, 2018
Answering the Dreaded Question: “How Are You Feeling?”
A Very Personal Advocacy Story
If someone 10 years ago had said to me that I would be speaking on a panel at a world-famous festival about how the cystic fibrosis online community has saved my life, I probably would have laughed in their face.
Let me clarify. I would have laughed because at that point I could have counted the number of people I knew with CF on both hands, since they were mostly just people in my local community in Nashville. I had just joined Facebook and my Twitter account was in its infancy. I knew that CF groups existed in chat rooms, but at that time in my life, I didn't feel the need to be engaged with other people with CF. It didn't help that most of the online conversations I had read up to that point seemed pretty negative and depressing.
Fast forward to 2013: I made more friends with CF and was meeting people through social media; however, it still felt like I was a part of one-way interactions, where I only saw them through pictures and posts. I could have used a more accessible online community during that time, since my life had changed dramatically in four years. I lost my mother, and my father was dying of cancer. Also, my health tanked very quickly (it's amazing how that happens), and I was no longer working.
As I was using this time to take care of my health, I also got more involved in my local CF chapter, which led to me joining a national strategic task force with other adults from around the country who had CF.
As members of the task force, we were given instructions to log onto a video conferencing app and that's when EVERYTHING changed for me.
I was finally able to interact with people in REAL TIME, while also keeping myself safe from germs. Being able to talk to people living with CF from around the country was truly an aha moment for me, and being a member of the online CF community went from feeling like a one-way interaction to a dynamic conversation overnight. This revelation eventually inspired a few of us to think even bigger -- that's how we created BreatheCon, a new virtual event for adults with CF.
At the first BreatheCon in 2016, 188 people living with CF came together face-to-face in the virtual environment. It immediately became clear that this was far more than just a one-time event -- it was a supportive community built entirely online. Building on the success of BreatheCon, we're now determined to make the online community and experience even better for people with CF to connect and have fun.
To help improve BreatheCon and the online CF community, I joined the CF Foundation as they submitted a proposal to South by Southwest Interactive (SXSW) to share about our experiences with online communities and to explore what else is happening in this virtual space. Our proposal, “Do Online Communities Make Us Healthier?” was accepted and we were invited to moderate and participate in a panel with other professionals in the online health community field.
I shared a bit of my story and discussed how our community has blazed a trail in using technology to connect with each other, crowdsourcing tips and tricks for living with the disease, and building relationships with people that we would not have otherwise met.
Participating on this panel confirmed a lot of my assumptions about our community:
Ten years after beginning my journey connecting online with people with CF, my life is totally different -- in some ways, for the better. I have connected with the most amazing people from around the world because of the internet; Facebook groups have proliferated on every topic imaginable; Instagram is a place where people share their life with CF through pictures and stories; Twitter is an incredible advocacy tool; and amazing bloggers, vloggers, podcasters, and YouTubers are making their voices heard.
Some of my closest friends are people that I have never met; some of the most personal conversations I have had are with people I will never hug; and even on the days where CF takes one of our own, we find strength and hope through the virtual hugs, prayers, and love.
In my own personal struggles, life changes, losses, and health peaks and valleys, the online CF community has remained a constant. To each and every person who reads this and has joined me along the way, thank you for saving my life.
Adult with CF
Marissa was diagnosed with CF at birth. She attributes being alive to her dedicated parents, incredible clinical teams, her friends, her CF tribe, and a very sassy attitude. She spends her time advocating for the CF community, being the “cool aunt,” raising her two adorable cats, eating at new restaurants, juicing, vogueing, and wearing caftans while chatting with all her friends with CF online. She moved to southern Louisiana in 2018 and is hopeful for the future of CF science and what lies ahead. You can follow her CF life on Instagram at @kissoffcf.
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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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