When I decided to study abroad in 1974, I also decided that I would not allow CF to stop me from living my life to the fullest.
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The Patient Registry is an invaluable tool for researchers conducting observational studies about people with CF in the U.S. About 50,000 individuals have been followed in the Registry since its inception in 1986; many of them have been included for over 20 years.
Ever wonder about an aspect of cystic fibrosis that you would love someone to research? Find out how you can submit a question in our first community-driven research project.
In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
If you have cystic fibrosis-related
Check in with your cystic fibrosis care team several months before your trip.
Going on vacation without your child with cystic fibrosis can be hard, but here are some tips to help make it a little easier.