RD-Connect

EURORDIS is one of 27 full partners in RD-Connect, a six-year project launched in November 2012 as an integrated platform connecting databases, registries, biobanks, and clinical bioinformatics for rare disease research.

EURORDIS is active in many facets of RD-Connect and thus has many opportunities to reflect the voice of patients throughout the various activities of the project. Funded by the EU Seventh Framework Programme under the International Rare Disease Research Consortium (IRDiRC), RD-Connect will develop a global infrastructure for sharing outputs of research projects, starting with the EURenOmics project focusing on the causes, diagnostics, biomarkers, and disease models for rare kidney disorders, and the Neuromics project that will use next generation whole exome sequencing to increase genetic knowledge of rare neurodegenerative and neuromuscular disorders.

EURORDIS contributes actively to the preparation and delivery of educational materials and to the consultation of RD patients on issues related to the research on “-omics” and the linkage of patient data across different infrastructures and across borders. Because of its direct involvement in ongoing projects supporting the development of biobanks and registries, EURORDIS contributes to RD-Connect work packages focusing on these types of infrastructures. EURORDIS also ensures interaction and coordination of the RD-Connect network with other initiatives within and beyond Europe and the dissemination of the RD-Connect project outcomes at the international level.