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.
After my son, Zach, was diagnosed with this cystic fibrosis, my wife and I began to understand the many challenges associated with it. We quickly realized we wanted to support the Cystic Fibrosis Foundation so we could help our son in every way possible. Here are some fundraising ideas that were simple, yet effective, for us in securing donations.
March 3, 2017
Why I Decided to Join a Clinical Trial on My 12th Birthday
Living a Life Managed by Numbers
Nothing in life will prepare you for when you are told that your child has been born with cystic fibrosis. In an instant, your world seems shattered and you are left alone, feeling helpless and overtaken with fear. You have two choices when faced with such adversity: You can let the circumstances overwhelm you, or you can make the best of a difficult situation and fight.
It was months before my wife and I pulled ourselves out from under the initial fog of managing the complexities of Zach's disease, which involves hours of therapy and myriad medications. Slowly, we shared our news with immediate family and perfected the nuances of CF care. It was then that it became crystal clear: We had an obligation to our son and the entire CF community to advocate and fundraise for a cure to end this insidious disease.
So, we founded Zach's Crew, a national Great Strides team. In a little more than a year, we were able to raise more than $40,000 through the generosity of our family, friends and community.
Below are some fundraising ideas that were simple, yet effective, for our teams in securing donations for the Foundation. We hope this will motivate you to make a difference and fight for a cure.
Father of a child with CF
Nick is father to his son Zach, who has cystic fibrosis. A graduate of Drexel University, Nick works as a Private Banker at PNC Wealth Management. He is a national advocate for the Cystic Fibrosis Foundation, participating annually in the Foundation’s largest advocacy event, March on the Hill. Nick and his wife Gretchen formed a National Great Strides team that walks and fundraises in Doylestown, PA; Chicago, IL and New York City, NY. Last year they were the top fundraising team at their local Great Strides walk in Doylestown, PA. Nick, Gretchen and Zach live in Doylestown, PA. You can follow him on twitter @ZachsCrewCF.
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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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