On 30-31 January 2019, the European Joint Programme on Rare Diseases officially kicked off in Paris, at the Institut IMAGINE.

This important initiative brought together over 130 institutions from 35 countries to create a comprehensive, sustainable ecosystem that enabled a virtuous circle between research, care, and medical innovation. The EJP RD had two main objectives: on one hand, to improve the integration, efficacy, output, and social impact of research on rare diseases through the development, demonstration, and promotion of Europe/worldwide sharing of research and clinical data, materials, processes, knowledge, and expertise. On the other hand, the initiative aimed to implement and further develop an efficient model of financial support for all types of rare disease research (fundamental, clinical, epidemiological, social, economic, health service), coupled with accelerated exploitation of research results for the benefit of patients.

The two-day meeting was open to members of the Executive Committee, who defined and presented the work packages, tasks, and subtasks to be implemented during this 60-month project, funded by the H2020 Programme.