Community Social Networking for Ehlers-Danlos Syndrome

While 10% of the U.S. population are afflicted with a rare disease, patients with a rare disease can have a difficult time finding a provider or useful information. Patients with rare diseases are often frustrated by lack of knowledge from their provider, lack of satisfaction with their provider, and lack of available time with their provider. Social connections and networks can be a useful tool for patients with rare diseases to seek and maintain support and information. For this study, a specific rare disease's (Ehlers-Danlos syndrome) support groups in a moderately sized metropolitan area were surveyed about their social interactions with others around their rare disease. The survey was distributed through online support groups on Facebook and was open over a 3-month period. For the 102 respondents that completed the social networking portion of the survey, there were 448 connections. The main modality of networking was in-person, with discussions about their rare disease occurring daily. Providers can utilize these social networks, after engaging with patients, to disseminate educational information and request feedback from patients. The social networks patients create can help them feel a sense of connectedness they might not otherwise feel due to their rare disease.