Additional file 1 of A community-centric model for conference co-creation: the world conference on CDG for patients, families and professionals

Additional File 1: List of references of rare disease medical conferences. List of studies describing rare disease medical conferences and respective data extraction. Date extraction includes the following details: country, year of event, disease, organizers, type of event, usage as research platform, audience, the number of participants, the inclusion of patients as panelists, the topic, major goals and main conclusions.