First EJP RD General Assembly
The European Joint Program on Rare Diseases (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 strengthen 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.
In addition, in collaboration with the Medical University of Gdansk, the EJP RD network organised the “Rare Diseases Perspective in Central-Eastern Europe Conference” on 17 Sept. The event gathered CEE community members and allowed for in depth discussions on the needs and benefits of the current RD landscape.
Moreover, EJP RD representatives participated in a session dedicated to rare diseases within the eHealth Forum which took place on the 20 of September in Sopot, Poland, where they presented the innovative solutions developed by the ERNs and under Pillar 2 of the EJP RD.
Within 9 month of its existence the EJP RD already demonstrates how the centralised collaboration between different stakeholders advances RD research for the benefit of patients. The bridges built between the expanded RD research community and the European Reference Networks, allow for the development of the RD Virtual Platform and a 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 actions leading to innovation in clinical trials, supporting translation of research results and the Rare Diseases Research Challenges partnership with industry, pave the way to an increasing EU competitiveness and a faster delivery of therapies. Finally, the support received by the EJP RD from the members of its Policy Board and the set up of the National Mirror Groups confirms the goal to fully integrate RDs in national strategies and ensure seamless connection to EU and international strategy levels with a special focus on CEE countries.