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.
A few weeks ago, while contemplating the trip
I was about to take to Washington D.C. to join my fellow advocates for the
Cystic Fibrosis Foundation's tenth annual March on the Hill, I challenged
myself to "think big." So I sat down in front of the computer and wrote a
letter to the President of the United States.
March 3, 2016
Changing How the Foundation Partners With People With CF
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"Think big." As parents this is what we encourage our kids to do -- in
one way or another -- as they grow up and figure out their unique place in this
world. Over and over, we remind them to keep shooting for the stars. After
all, who knows where their hopes and dreams will take them one day?
few weeks ago, I decided to follow my own advice. For many reasons, cystic
fibrosis was weighing heavily on my mind. While contemplating the trip I was
about to take to Washington D.C. to join my fellow advocates for the Cystic
Fibrosis Foundation's tenth
annual March on the Hill, I challenged myself to "think big." So I sat down
in front of the computer and wrote
a letter to the President of the United States.
things, I thanked him for his year-old Precision
Medicine Initiative and pointed out our shared goal of creating a world
without any diseases. Then I ended my letter by mentioning that I would be in
Washington D.C. at the end of February to discuss the
importance of medical research with elected officials on Capitol Hill.
And that's when I decided to really "go big." I told him that I would be
honored to meet him and personally thank him and his administration for giving
children like my son increased hope for his future.
To be honest, the
simple act of pushing myself to think and fight "big" for my son was
rewarding enough. But then on the morning of Feb. 12th, I received a call
from the White House chief data scientist inviting me and my son to the
Precision Medicine Initiative Summit on Feb. 25th. We would be in the same
room as key leaders in the fields of science, medicine and technology
when President Obama gave his update on this important initiative. This
was really BIG!
Over the course of my three-day visit to
Washington last week, "think big" became my personal mantra. It is what
I told myself as I walked into a room of 200 invited guests and members
of the press corps. It is what I thought to myself in disbelief as I
met and shook the hand of Francis Collins, director of the National
Institutes of Health. And it is definitely what I repeated to myself
as I sat only a few feet away from the President as he talked with
passion and optimism about unlocking cures for rare diseases.
After the Summit, my son and I were invited to attend a
round table focus group. The moderator of our group was John Holdren, the
director of the White House Office of Science and Technology Policy, and
our assigned topic was securing data for the proposed patient research
For over an hour, I listened to professors, lawyers and
other professionals argue about privacy issues. I spent most of the
meeting feeling unsure if my voice truly mattered in the scope of this
discussion. However, reminding myself to "think big," I raised my hand
toward the end of the conversation. With all eyes on me, I held up my cell
phone and told them that my son's hospital had already implemented shared
data files on a mobile application -- something that I willingly and
gratefully registered for. Then to illustrate the advantages of shared
data, I told them the story of how I had recently switched my son's care from our local
pediatric hospital to the adult clinic. Because of this program, that
transfer of care only required one short phone call.
of the discussion leaders came up to me to thank me for my input. She
emphasized that sometimes people get so caught up in all the reasons why
something might not work that they overlook the actual impact the effort
In that moment I was once again reminded that as
advocates for our children, we have more power than we can ever imagine. We
may not be leaders in the research or medical world, but we have our
voices. Mine took my son and me all the way to the White House. Just think
of the amazing places yours will lead you. The key is to follow your
heart and always "think big."
Mother of a teen with CF
Katrina is a mother of three living in San Diego, Calif. Her oldest son Sean was diagnosed with cystic fibrosis just four days before his second birthday. Together with Sean, Katrina gives speeches at CF Foundation fundraisers, and local biotech firms and pharmaceutical companies about the importance of CF medical research and the impact it makes on families living with chronic diseases. She serves on the Board of Directors for the San Diego Chapter of the CF Foundation and co-chairs the Moonlight Beach Great Strides Walk. She and her husband Robert have committed themselves to keep walking until they find a cure for their son, as well as the 30,000 other sons and daughters living with this disease.
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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.
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