CysticFibrosis.com was founded in 1996, at the dawn of the Internet and rise of the e-Patient (electronic or empowered patient, family member and care giver). Today, we are dialoguing, having real-time conversations and delivering information to our community in comprehensive and innovative ways.
CF e-Patients seek CysticFibrosis.com to connect with others sharing similar experiences; share their stories, encourage one another, and seek hope. CF e-Patients educate themselves regarding available treatments and medical regimes. CF patients increase compliance and proper usage of medical equipment. CF patients gain a greater knowledge of how medications and treatments may impact long-term pulmonary function.
We are continually conducting research and exploring ways we can become even more sophisticated as e-Patients.
CysticFibrosis.com Metrics
To date, CysticFibrosis.com has:
Over 7,500 Registered Members
104 Countries are represented
The CysticFibrosis.com forums contain over 4 years of valuable CF data:
over 200,000 searchable messages
over 20,000 CF related topics
700 Active Bloggers
CF Tube includes 100 Videos, 12 Channels
Our videos include:
professionals, doctors, sponsors, research
e-Patients comprised of several age segments
Our e-Newsletter, “The Servers” is 12,200 Distribution
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.
The Team
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| Jeanne Barnett |
Founder/President |
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| Peter Barnett |
Vice President, DPT, OCS |
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| Sarah Katopodis |
Marketing Director |
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| Mary Helen Camporeale |
Accounting Manager |
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| Andrei Filipovich |
Information Technology |
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| Justin Niemczyk |
Information Technology |
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Location
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 Manhattan, NYC.
Our Future is Bright
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.
Contact Us
info@cysticfibrosis.com
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