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.

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

image of Luciad - Geospatial software for mission-critical operations

Luciad - Geospatial software for mission-critical operations

Founded in 1999, Luciad serves clients in Europe, Asia and the Americas. Though it recently was acquired by Hexagon Geospatial, they kept an agile SME mindset. Thousands of end users work directly with Luciad’s geospatial applications, and major systems integrators (think Airbus Defense and Space, Lufthansa Systems, NATO, Thales…) incorporate its software in their own products.

NCP Flanders went to Leuven to interview Frederic Houbie, the Research Projects Manager at Luciad, about how he sees Horizon 2020. Luciad is a partner in the MARISA project, which is a collaborative RIA project submitted to an ICT call topic