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
Miricle - Mine Risk Clearance for Europe
The Miricle project, ‘Mine Risk Clearance for Europe’, obtained funding under the European Defence Industrial Development programme call ‘Underwater control contributing to resilience at sea’. The main objective of the project was to achieve a European and sovereign capacity in future mine warfare and create a path for the next generation ‘made in Europe’ countermeasure solutions. In order to realise this objective, Miricle addressed various stages: studies, design, prototyping and testing. These stages inter alia included the successful testing of an XL Unmanned Underwater Vehicle, a protototyped mine disposal system and multiple innovative systems to detect buried mines. Flanders Marine Institute (VLIZ), was one of the five Belgian partners in the consortium. Within the project, VLIZ was able to forward its research on the acoustic imaging of the seabed to spatially map and visualize buried structures and objects - in this case buried mines - in the highest possible detail. VLIZ also led the work on ‘Port and Offshore Testing’, building on the expertise of the institute in the field of marine operations and technology.
