EJP RD
The European Joint Programme on Rare Diseases (EJP RD) 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, production, and social impact of research on rare diseases through the development, demonstration, and promotion of Europe- and worldwide sharing of research and clinical data, materials, processes, knowledge, and know-how; on the other hand, the project aimed to implement and further develop an efficient model of financial support for all types of research on rare diseases (fundamental, clinical, epidemiological, social, economic, health service), coupled with accelerated exploitation of research results for the benefit of patients.
ROLE OF THE FOUNDATION
The Foundation led the activities necessary to provide an appropriate strategy to address ethical, regulatory, and legal issues, ensuring that relevant rules were complied with throughout the duration of the project. This enabled the EJP RD to conduct not only ethically-sound but also regulatory-compliant multinational research.
FUNDED BY: H2020-SC1-BHC-2018-2020/H2020-SC1, GA 825575, 2019-24 (www.cordis.europa.eu/project/id/825575).
DURATION: Jan 2019 - Aug 2024
PARTNERS:
130 institutions from 35 countries.
www.ejprarediseases.org
View all the project updates
Ethics and regulatory guidance to address the challenges encountered in research on rare diseases: the experience of EJP RD
Join the paediatric expert group for youth
EJP RD final conference: advancing rare disease research
New MOOC on health data ethics in rare disease research
Training on strategies for undiagnosed rare disease cases
New MOOC for rare diseases: learn translational research
EJP RD Funding Call for Rare Diseases Research Opens 12 Dec
FGB at the EJP RD General Assembly and Consortium Meeting 2022
EJP RD opens final call for research mobility fellowships
EJP RD opens call for research mobility fellowships
Summer school on rare disease registries and FAIRification of data
FAIRopoly game launched to illustrate Data FAIRification
EJP RD: 4th Joint Transnational Call for Rare Diseases Research
Endocrine cancer: ERN workshop in Gliwice
