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.

RD Connect

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.

Page created: 23/07/2013
Page last updated: 27/09/2016
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases