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We are patients and families from all over the world, sharing our experiences with CF and gaining power over our disease and our futures. We are joined together to grow our knowledge and reach amazing goals. Please join our community and our movement--together we are building knowledge and reaching for a cure.
CysticFibrosis.com is a social health community, founded in 1996 at the dawn of the Internet and the rise of the e-patient — the electronic or empowered patient. We are a source of information, hope, and encouragement for patients and families affected by CF. We educate each other in comprehensive and innovative ways: forums, chats, videos, newsletters, polls and blogs. The KnowCF section of our site offered timely and crucial information on the H1N1 virus and CF last fall, followed by a unique video series on parenting children with health issues. More fantastic programs are in the pipeline for this spring and summer.
CF patients, their families and caregivers use CysticFibrosis.com to connect with others sharing similar experiences: to seek hope, to guide each other through new experiences, and to comfort each other in times of grief.
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 pulmonary and digestive function.
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 revolutionizing the traditional flow of information.
Over 9,058 registered members, representing 103 countries.
Our Forums and Blogs have been up and running for over 13 years and contain:
CF Tube includes 121 Videos, 10 Channels. Our visual media features professionals, doctors, sponsors, research professionals and e-patients divided into several age groups.
Our bi-monthly Newsletter distribution is over 8,000.
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.
Jeanne Barnett - Founder/President
Peter Barnett - Vice President, DPT, OCS
Sarah Katopodis - Marketing Director
Mary Helen Camporeale - Accounting Manager
Ennio Bozzetti - Information Technology
CysticFibrosis.com is a member of the Medrise.com Health Network of online communities. We are located in Cedar Grove, NJ. We are 15 miles west of New York City.
Jeanne Barnett is an e-patient expert and spends most of her time studying and researching the cystic fibrosis e-patient. Jeanne is focused on 21st century health care.
Jeanne currently advises and coaches pharmaceutical companies on how to engage with and have conversational relationships with the CysticFibrosis.com e-patient community.
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