Launch of a global collaborative social network, Share4Rare, to promote citizen science in rare disease research

A new study on global collaborative social network to promote citizen science in rare disease research has been published in JMIR Formative Research. This new collaborative social network, entitled Share4Rare, is a global secure community of rare disease patients, with publicly accessible information and a research section aiming to collect patient information for further analysis. The core value of this platform is to promote international research. This platform was designed with consultation and input through workshops from patients, caregivers, clinicians, and researchers. The codesign methods with patients provided a patient-centric design to facilitate the donation of clinical information to foster research dedicated to patients with rare diseases.