EJP RD General Assembly.The EJP RD held its first general assembly meeting on 17 – 19 September at the Medical University of Gdansk, Poland. More than 200 members and delegates coming from European countries, plus Israel, Turkey, and Canada, gathered together to discuss about the achievements reached in these nine months of activity, since the kick off meeting in January 2019. This 3-days meeting has been an extremely important opportunity for all EJP RD members to strength internal cooperation, define new cross-collaborations between the members and institutions, and consolidate activities and projects for the upcoming year. The EJPR RD tackles challenges in the rare disease field to trigger the impact patients expect. The consortium validated the working plan for the second year of the project and all EJP RD members confirmed their high commitment and motivation.
Within 9 month of its existence the EJP RD already demonstrates how the centralised collaboration between different stakeholders advances rare disease (RD) research for the benefit of patients. The bridges built between expanded RD research community and the European Reference Networks (ERNs) allow the advancement of RD Virtual Platform and common approach to standards, registries, data and FAIRification. Integration of patients in all activities and close collaboration with funders leads to the long-expected mindset changes on patient-centered research. The grounds put by actions dedicated to innovation in clinical trials, support for translation of research results and Rare Diseases Research Challenges partnership with industry, pave the way to EU competitiveness and faster delivery of therapies. Finally, the support received by the EJP RD from the members of its Policy Board and initiation of National Mirror Groups confirms the willpower to fully integrate rare diseases in national strategies ensuring seamless connection to EU and international strategy levels with special attention to CEE countries.
“The International Summer School on Rare Disease Registries and FAIRification of Data” workshop was held in Rome at the end of September, under the guidance of Prof. Domenica Taruscio and with the collaboration of Dr. Claudio Carta. The course gathered together patient representatives, researchers, healthcare professionals, and students coming from all over Europe who brainstormed around FAIR registry and on how establish it in a high-quality level.
EJP RD in the NEWS of different countries…