ELIXIR-EXCELERATE D8.5: Report on the ELIXIR workshops organized with the Rare Diseases communities

In this third report on training workshops we first describe the workshops from M26 until M45 and planned future workshops for the rare diseases (RD) domain within the context of the ELIXIR-EXCELERATE project. Within the reported and planned training events for the RD domain within ELIXIR community, the suggested focuses from the results of the ELIXIR Training - Rare Diseases Training capacity and needs survey 2017, were used. The gathered information was used (1) to update or identify key training contacts/subjects in the RD community, (2) to updated specific training needs in the RD community and (3) to spread specific knowledge needed in the RD community. An important mission of EXCELERATE WP8 ‘ELIXIR infrastructure for Rare Diseases research’, defined at the kick-off meeting on November 24, 2015 in Leiden, is to help the rare diseases community in different nodes to raise its infrastructure activities to the level of best practices in ELIXIR infrastructure, i.e. where rare diseases data, metadata, tools, and catalogues are shared, interoperable, and sustainable at the source, are conformant with a common set of principles and standards across participating countries/nodes and in agreement with the ELIXIR platforms. To achieve optimal knowledge exchange between the domains, workshops in this WP are typically co-organised with members from the rare diseases community and co-sponsored by relevant projects such as RD-Connect1and connected to important starting projects and initiatives on rare diseases as is the European Joint Programme on Rare Diseases (EJP-RD) or 1M genomes by 2022 declaration. During this third reporting period a total of 9 different international events involving the participation of at least eight ELIXIR nodes (ES, HU, NL, FR, IT, BE, DE and SI) and reaching more than 2000 experts and researchers in the RD field across Europe were organised. These events, coordinated by or in collaboration with the ELIXIR rare disease use case and the ELIXIR training platform, have also an impact in the the dissemination of all the possibilities ELIXIR infrastructure offers to the RD community through the different ELIXIR platforms. Events were either organised specifically with the Rare Diseases (RD) community, or a separate stream/session for the RD community was co-organised around other events. Training workshops and courses were delivered in partnership with WP11 ‘EXCELERATE Training Programme’. The delivery of workshops was complemented by the ELIXIR implementation study/RD-Connect proof-of-concept to test interoperability backbone components for enabling queries across rare diseases biobanks and registries. The training capacity and needs for RD community, that were identified in the “ELIXIR Training: Rare Diseases Training capacity and needs 2017” survey was used for the delivery of RD training events