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.
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Every year, hundreds of thousands of people raise millions of dollars for Great Strides -- the CF Foundation's largest national fundraising event. But did you know that the staff of the national office in Bethesda, Md., form their own department teams and also raise money alongside the CF community?
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.
My life milestones wouldn't have been possible without the drive and dedication of the generous people who donate to the Cystic Fibrosis Foundation.
I started “striding” in 2011 and have made it a goal to participate every year. Here are the top five reasons why I stride and think others should too:
Paul participates in Great Strides, advocates on the Hill and has even launched a CF fundraiser. Oh, and he's only 18.
Today, I no longer feel tied to a hospital bed and a grim diagnosis, and I have you to thank.
This year our CF Foundation employee Great Strides team adopted a “Star Wars” theme and, believe me, we went all out to make the experience extra special and out of this world. See for yourself!
I used the Cystic Fibrosis Foundation Patient Registry Annual Data Report to ask my care teams questions to more effectively manage my CF. You can, too.