Who are we?

We are patients, families, friends, medical professionals and industry experts from all over the world, sharing our experiences with CF, and offering support, education and hope for the future.

Our History

CysticFibrosis.com was founded in 1996 at the dawn of the Internet and the rise of the e-patient—the electronic or empowered patient. Our founder, Jeanne Barnett, is patient relationship expert, focused on cystic fibrosis. Early on, she saw the value in patient communities being able to search for and exchange information in comprehensive and innovative ways: forums, chats, videos, newsletters, polls and blogs. These opportunities for communication are particularly meaningful in the CF community because patients are increasingly kept apart to avoid bacterial transfer.

The Present

CysticFibrosis.com connects people, enabling them to share information, experiences, hope, guidance and support. Our members learn about clinical trials and new research. They compare treatment regimens, and increase compliance and proper use of medical equipment. They gain perspective and receive encouragement on how to optimize their long-term health.

The Future

The knowledge shared and gained on CysticFibrosis.com percolates through our members, through CF centers and through research groups across the world. We believe that our community and our movement not only fuel the search for a cure for CF—we are transforming that search and the traditional flow of information.

We offer many valuable tools and resources to help you manage cystic fibrosis. We hope you take full advantage of all CysticFibrosis.com has to offer you and your loved ones.


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