Welcome

New to CysticFibrosis.com

 

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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Melissa75

Melissa75

3 Comments

  1. December 18, 2015 at 1:21 pm

    I want to start a new post but can’t find an option to do so! Could you point me to the right page/button to start a new topic?

    • December 19, 2015 at 2:10 am

      Click on forums. Pick the forum topic that best suits your post e.g. adults, newly diagnosed…etc, then scroll down past all the threads. You’ll see New Post and an area to type. I’m happy to help more if that doesn’t do the trick.

  2. December 21, 2015 at 3:36 am

    Thank you for another informative website. Where else may just I am getting that type of info written in such a perfect means?

    I have a mission that I am just now working on, and I’ve been on the look out for such information.