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.
Members of the cystic fibrosis community can have an even greater say in research when they vote for the Insight CF questions they most want answered. Readers have until June 21 to vote.
June 7, 2017
Why My Wife and I Choose Laughter When It Comes to CF
5 Tips for Avoiding Germs as a Parent With CF
Fifteen years ago, I became part of the CF community after my two daughters were diagnosed with cystic fibrosis. After the initial shock and the struggle to establish a new normal for our family, I longed to have a connection to other families traveling through life with CF. Although I searched for ways to connect with other community members, there were very few options.
Initially, the only door open to patients and families was fundraising. So, I joined my local Great Strides committee. A few years later, another door opened, and patients and families were invited to help establish an advisory council for their CF care center. I jumped at the chance to be more connected to my local CF community.
Today, more doors have opened, and the Cystic Fibrosis Foundation is now working to include the voice of the CF community in every aspect of its work.
In 2015, I joined the newly formed Patient and Family Research Advisory Committee, a group of people with CF and CF family members from across the country. Our mission is to include the patient voice in the design and dissemination of CF research, focusing on research using the data in the CF Foundation Patient Registry.
Late last year, we launched the Insight CF Registry Research Project -- the CF Foundation's first community-driven research initiative. As each of these doors have opened, my connection to the CF community has grown, and I am excited that there are now so many options for more folks to make a stronger connection. Participating in the Insight CF project has given me the opportunity to reach out and encourage others to get involved, and add their voice to the work of the CF Foundation.
We began the Insight CF project by asking people in the CF community to submit research questions that could be answered through the Registry. More than 350 people submitted questions, and more than 400 questions were asked! The questions were sorted into three categories:
All submitted questions will be used to help us understand the community's needs and to help inform the research moving forward. The questions that fell into the first category will be shared across the CF Foundation to assist with content development on the CF Foundation's website. The questions in the second category -- those that would require more research outside of the Registry -- will be forwarded to researchers for consideration.
The questions that fell into the third category have already come back to our Insight CF project team (i.e., adults with CF, parents, siblings, and spouses). We worked to condense those 150 questions into a list of 22 questions.
We are now asking you to vote on which questions are most important to you so that we can answer the top questions by using the Registry. We need your vote, because no one knows CF better than the people who have it, their caregivers, family, and friends.
Let us know what is important to you. Your experience is valuable, and your vote will help us know which questions will have the greatest benefit to the CF community. The CF Foundation is listening. Make your voice heard. Vote.
Mother of two children with CF
Laurie is mother to Maureen and Kelly, who were born with cystic fibrosis. She is a graduate of Russell Sage College and the University of Vermont, where she works. Laurie is an active advocate for the Cystic Fibrosis Foundation, a member of the Vermont CF Center Advisory Board, Team Eddy’s Great Strides Team Leader, and a member of the Foundation’s Patient and Family Research Advisory Council. Laurie lives in South Burlington, Vt., with Maureen; Kelly; her husband, Jonathan; their dog, Roxy; and cat, Grayling. You can contact her at TeamEddyVermont@gmail.com, or follow her @LeddyVT on Twitter.
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