The Data Management and Coordinating Center manages the RDCRN’s Facebook and Twitter pages. The RDCRN’s social media pages are intended to increase community awareness of rare diseases and the RDCRN program, as well as assist with protocol accrual and registrations for the RDCRN Contact Registry. Currently, the RDCRN social media pages highlight protocol and site activations and major accomplishments within the RDCRN. These pages may also include posts featuring patient advocacy groups affiliated with RDCRN consortia, information about specific diseases studied by the RDCRN, and upcoming patient-focused rare disease events or conferences.
To request specific content to be posted on the RDCRN social media pages, please email RDCRNSocial@epi.usf.edu.
by Hannah Fitterman