Grant Proposal of European Joint Programme on Rare Diseases (EJP-RD) Accepted!

The grant proposal for the European Joint Programme on Rare Diseases (EJP-RD) was accepted in August by the European Commission (see call information here)!

This programme aims to develop an efficient model of financial support for all types of rare disease research by the creation of a research and innovation pipeline in order to ensure a rapid translation of research results into clinical applications and uptake in healthcare, for the benefit of all patients. It will run from January 2019 to December 2024, consists of 85 partners (including the 24 European Reference Networks, Eurordis and Inserm/Orphanet) from 33 participating countries, and has a total budget of over 90 Million euros. The initiative should follow the policies and contribute to the objectives of the International Rare Diseases Research Consortium (IRDiRC), which include the diagnosis of RD patients within a year of first sub-specialty medical consultation and the approval of 1000 new therapies for RD by 2027.

The EJP-RD Cofund will be implemented through a joint programme comprised of 20 work packages within four main pillars, which are:

1. Collaborative research Funding: includes Joint Transnational Calls for collaborative research projects and funding for networking events to share knowledge on rare diseases.
2. Coordinated access to Data and Services:  includes the building of a comprehensive, FAIR-compliant virtual platform that will centralize all resources and metadata from rare disease registries, biobanks, research infrastructures, genome-phenome repositories, methods, standards, etc.
3. Capacity Building & Empowerment: includes trainings for patients and healthcare professionals and the development of an online education platform.
4. Accelerating translation & therapy development: includes providing support for funded RD projects as well as  dissemination of improved clinical study methodologies to assist researchers (with direct involvement of ERNs).

The ERNs (and VASCERN) will be consulted and involved in many of the work packages and will also be able to benefit from the funding from Pillar 1 calls. The ERNs will equally have one representative on the Governing board of the EJP-RD so that our strategies/issues are taken into account when major decisions are being made.

An EJP-RD website, containing information on the programme, will be developped in 2019. Stay tuned!