Partnerships

Rare diseases

Rare diseases

Partnership website: https://www.ejprarediseases.org/erdera/

The partnership aims to improve the life of patients with rare diseases by developing diagnostics and treatments for rare diseases through multidisciplinary research & innovation programmes. The partneship will soon starts it activities.

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.

More detailed info Overview of partnerships

How to use partnerships?

  • 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

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ScreenME - Enhancing excellence in screen media entrepreneurship

The Horizon2020 twinning project ScreenME has as its objective to enhance excellence in screen media entrepreneurship at Tallinn University (TLU). To do so, ScreenME has established a network of universities across Europe that aim to improve research into and teaching of entrepreneurship for the screen media industry. ScreenME will develop a teaching course and will kick off research initiatives and projects on entrepreneurial activities in media organisations. The research group on ‘Studies in Media, Innovation and Technology (SMIT)’ of the Vrije Universiteit Brussel (VUB) is partner in the network and is involved in two cross-cutting activities of the project: support for early stage researchers and developing stakeholder involvement.

Read the full article Check out the other testimonials 
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