Rare diseases
Partnership website: https://www.ejprarediseases.org/erdera/
The partnership will coordinate national, local and European research and innovation programmes, combining research funding and implementation of research supportive activities such as training, data access infrastructures, data standards etc.
The main goal is to improve the life of patients with rare diseases by developing diagnostics and treatments for rare diseases through multidisciplinary research and innovation programmes with all relevant stakeholders. This will increase impact and uptake of research results as well as increase the visibility of EU leadership in rare diseases research.
Timeline & key documents
- More information on the partnership can be found in the draft outline of partnership proposal (February 2022).
- A first version of the Strategic Research & Innovation Agenda that will underpin the Partnership was published in Spring 2023 in the context of a public consultation. The SRIA is yet to be finalised.
- The partners involved in the European Joint Programme on Rare Diseases (EJP RD) have played an important role in the preparation of the SRIA.
- The partnership proposal was submitted on 19 September 2023 for funding under Horizon Europe as a co-funded partnership between the European Commission, European Member States, and beyond.
- The Partnership is foreseen to start its first activities in 2024.
Contact
Commission services: RTD-RD-PARTNERSHIP@ec.europa.eu
Partners (main contact): erdera@ejprarediseases.org
What are partnerships?
Partnerships group the EC and private and/or public partners, to coordinate and streamline the research & innovation initiatives and funding in some selected key domains.
How to use partnerships?
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orientation
Partnerships publish strategic documents, e.g. outlining the main research and innovation challenges or key focus points. -
networking
Partnerships often organise events, such as info days, brokerage events, etc. Meet potential partners and learn about the nuances that are not visible in the official documents. -
ecosystem analysis
Partnerships typically have an advisory board, and publish impact studies of previous actions. These are good sources of information to uncover the main R&D&I players in the domain. -
steering the agenda
Partnerships collaborate with the EC on outlining the strategy and the future funding opportunities in their domain, based on input from industry, academia, and other stakeholders.
Testimonial
ERC grants awarded to professor Inez Germeys
Professor Inez Germeys leads the Center for Contextual Psychiatry at KU Leuven, which is a large multi-disciplinary research group focusing on the interaction between the person and the environment in the development of psychopathology. She has received a European Research Council (ERC) Consolidator grant (INTERACT) and Proof of Concept grant (IMPACT). With these grants professor Germeys and her team researched a new mobile self-management therapy for patients with a psychotic disorder. The Acceptance and Commitment Therapy in Daily Life (ACT-DL) was further developed for the clinical environment. In line with that the Horizon 2020 IMMERSE project aims to thoroughly evaluate strategies, processes, and outcomes of implementing a digital mobile mental health solution.
