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 Partnership is foreseen to start its first activities in 2024.
Contact
Commission services: RTD-RD-PARTNERSHIP@ec.europa.eu
Partners (main contact): Drafting Group of Member State representatives
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
BEAT-AF - Ground-Breaking Electroporation-based intervention for Atrial Fibrillation treatment
The Horizon2020 project BEAT-AF brings together 9 European renowned clinical centres in France, Belgium, Czechia, Germany and Austria. Together, the consortium strives to revolutionize Atrial Fibrillation (AF) treatment through catheter ablation and contribute to decrease the huge burden of AF in Europe. The BEAT-AF project kicked off in 2021 and will run until 2026. The department of electrophysiology of the AZ Sint-Jan Hospital in Bruges is partner in the project and has so far contributed to the pre-clinical development, the first in man studies and first registries of the revolutionary AF treatment put forward by the consortium. The first pilot studies show that the treatment is safe, effective and efficient.
