Brian Loew*, Inspire, Princeton, United States Track: Business Presentation Topic: Consumer empowerment, patient-physician relationship, and sociotechnical issues Presentation Type: Rapid-Fire Presentation Submission Type: Single Presentation Building: Mermaid Room: Main Auditorium Date: 2013-09-23 04:00 PM – 06:00 PM Last modified: 2013-09-25

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Neurofibromatosis (NF) patients use NF-related social media for information gathering more than emotional support, according to research released in late February 2013. The findings shed light how patients and caregivers affected by rare diseases use online support communities to help manage their disorders.
Nearly two-thirds of respondents to an online survey of the Inspire/Neurofibromatosis Network Support Community said they belong to NF-specific social networks to learn how others are managing the rare disease. More than half of the respondents said they find tips and ideas related to managing their NF that they could not find elsewhere. Forty-four percent said they joined social networks to connect with others facing the same health challenges.
Patients with moderate-to-severe NF are more likely to report online communities are an essential resource, the survey said. As one of the respondents, a 28-year-old man with neurofibromatosis type 1, told us, “Online communities show me what others are going through, they help keep me updated on current NF1 topics, and also provide a place for me to release my feelings with like-minded people.”
Neurofibromatosis is an incurable genetic disorder of the nervous system, which causes tumors to form on the nerves anywhere in the body at any time. People affected NF and other rare diseases indicate that feelings of isolation make it more difficult to manage their diseases well. Healthcare social media, particularly social networks, not just help ease feelings of isolation, but give patients and caregivers outlets to valuable practical and clinical information. This survey demonstrates that, for healthcare social networks, the ability to gather clinical and practical information is a critically important.
Inspire conducted the survey in partnership with Manhattan Research and Neurofibromatosis Network, a nonprofit patient advocacy organization.

--Brian Loew, CEO, Inspire