The European Joint Program on Rare Diseases (EJP-RD) up and running
The main goal of the European Joint Co-fund Programme for Rare Diseases (EJP-RD) is to establish an urgently needed comprehensive strategy covering research, data, tools and clinics leading to optimisation and exploitation of results, higher and timely diagnostic rates, faster drug discovery at reduced costs, improved patients’ care, empowering all stakeholders as well as giving Europe a leading role in the field of RD in the coming years.
Indeed, EJP-RD aims to establish a sustainable and interoperable organisation for data generation re-use and sharing based on FAIR principles (Findable, Accessible, Interoperable, Re-usable) ; to structure the connection with European Reference Networks ; to fund high-quality, transformative research, enhancing uptake of research results for translation into healthcare and effectively transferring innovation for exploitation by SMEs and industry ; to promote adapted research methodologies for RD research ; to provide capacity building to all relevant stakeholders for a better research in the future ; and to ensure that patients are involved in every step of the research pathway.
Coordinated by the Inserm in France (by Daria Julkowska at the Institute (ITMO) of Genetics, Genomics and Bioinformatics, led by Catherine Nguyen), the EJP-RD is a multi-stakeholder consortium of 85 full partners and 71 third-linked parties with a pan-European coverage. Canada, Japan and Australia will also collaborate in the programme.
EJP-RD is an inclusive effort, building on existing resources, experiences and networks including eRare, Orphanet, RD-Connect, EURORDIS, ERNs, and research infrastructures like ELIXIR, BBMRI, EATRIS, ECRIN, INFRAFRONTIER, amongst many others.
The EJP RD kickoff meeting took place on the 30 and 31 of January. The discussions were organised around four pillars and transversal activities:
- Coordination, strategy, sustainability, ethics and communication
- Funding collaborative research on rare diseases;
- Innovative coordinated access to data and services for transformative rare disease research;
- Capacity building and empowerment;
- Accelerating the translation of high potential projects and improving outcomes of clinical studies in small populations.
It was the occasion to identify the majority of interactions between WPs and discover new ones. The expected outcomes and outputs were presented. It was stated that the EJP RD strategy is highly dependent on the connexion with the ERNs and IRDiRC and pointed out that ExComm members are key in the communication and work with involved partners.
Further to the kick-off meeting, a website has been launched: www.ejprarediseases.org. Alongside with update dinformation on their activities, the first call for research projects funded through its Pillar 1 is published, as well as training opportunities.
EJPRD partners are now running their first activities, with regular meetings and workshops preparing the future for RD research in Europe.