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Knowledge Generation & Dissemination within the Scope of Rare Diseases: RareConnect & its Online Patient-Centered & Patient-Driven Research Approach

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Alternate URL:
http://bit.ly/1iXVFU7

Type of work: Poster

Categories:

e-Health | Usage & Uptake

Abstract:

Online patient communities (OPCs), despite being a recent phenomenon in the health sector, are having a profound impact on patient-centred research and health care due to their innovative approach of knowledge generation and dissemination. RareConnect, an initiative of the European Organisation for Rare Diseases (EURORDIS) stands out as an OPC that helps to fulfil the information and support needs of people living with a rare disease, while fostering knowledge generation and dissemination in this specific medical field, thanks to its particular approach to online communities. This poster presents the results of a qualitative study that reveals the most relevant features that make RareConnect a rare disease knowledge repository based on an online a patient-centred and patient-driven approach.