Partnerships

Rare diseases

Rare diseases

Partnership website: https://erdera.org/

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 started its activities in 2024.

The ERDERA partnership was launched in September 2024, with a budget of 380 million euros & uniting over 170 organisations. It 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.

Past & current calls for proposals

Since it took off in 2024, ERDERA has launched 1 joint transnational call. ERDERA has announched it will soon launch it's first Clinical Trials call. Find out more on the funding page on the ERDERA website. 

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 was launched in September 2024. Read all about it here

Contact

Subscribe to the ERDERA newsletter here.

Contact ERDERA via the contact form on the ERDERA website: ERDERA - European Rare Diseases Research Alliance

Commission services: RTD-RD-PARTNERSHIP@ec.europa.eu

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 YoPA – Youth-centered participatory action for a healthy lifestyle

YoPA – Youth-centered participatory action for a healthy lifestyle

The YoPA project, ‘a youth-centred preventive action approach towards co-created implementation of socially and physically activating environmental interventions’ obtained funding from Horizon Europe’s Health Cluster. The project addresses the multifaceted challenges of physical inactivity and health inequalities through a unique participatory approach. The project places teenagers between 12 and 18 years old in vulnerable situations at the forefront of the intervention process. The Institute of Tropical Medicine is a partner in the project and will conduct a Realist Evaluation to understand how youth co-creation contributes to improved adolescent health and well-being in four cities in Denmark, Netherlands, Nigeria and South Africa.  By integrating its results and sharing its approach in an open access Toolbox, ITM aims to contribute to fostering sustainable, youth-led solutions for healthier urban environments.