Abstract

Summary: According to a new survey, neurofibromatosis (NF) patients use NF-related social media for information gathering more than emotional support.
Keywords: Neurofibromatosis, NF, social media, online communities, patient engagement.
Citation: Novack J. Neurofibromatosis social media trends. J Participat Med. 2013 Feb 28; 5:e11.
Published: February 28, 2013.
Competing Interests: The author is affiliated with Inspire, which conducted the survey in partnership with Manhattan Research and Neurofibromatosis Network, a national patient advocacy organization.

 
According to a new survey by Manhattan Research, neurofibromatosis (NF) patients use NF-related social media for information gathering more than emotional support.

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 can 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, said, “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. NF is one of the most common genetic disorders in the US, affecting more than 100,000 Americans.