ERDERA Partnership: a €380 million effort to transform rare disease research under Horizon Europe

The European Union, its Member States and countries associated to its research and innovation programme, Horizon Europe, have joined forces in a new European Partnership on Rare Diseases (ERDERA). Launched under Horizon Europe, ERDERA’s aim is to transform the landscape of rare disease research across the continent and deliver significant health benefits to the estimated over 30 million people in Europe affected by rare diseases through improved prevention, diagnosis, and treatment.

Iliana Ivanova, Commissioner for Innovation, Research, Culture, Education and Youth, said: 

“Millions of Europeans suffer from one of the rare diseases, but we lack a good understanding of their condition as well as preventive measures, diagnostics and treatments. This is where a common policy at EU level and pooled resources can make a huge difference. The new ERDERA partnership can harness the unique potential of Horizon Europe in changing people’s lives for the better. I wish it all success in its important work.”

With nearly 180 partners from 37 countries, a 7-year duration and a total estimated budget of €380 million – of which approximately 150 will come from the European Union via Horizon Europe and the rest from EU Member States, countries associated to Horizon Europe and public and private partners - ERDERA is the largest co-funded partnership in the field of rare disease research and innovation.

This partnership will unite these entities and the broader research community to advance a shared vision outlined in the Strategic Research and Innovation Agenda (SRIA) of ERDERA. It aims to address unmet medical needs and enhance the coordination of European and national research programmes.

The Partnership has outlined several components of activities, including:

• Joint Transnational calls for interdisciplinary and collaborative research and innovation projects;
• Setting up of the Clinical research network to accelerate the clinical trials preparedness on rare diseases;
• Alignment and integration of national and European research plans;
• Knowledge and data sharing and analyses services;
• Enhancing international cooperation by supporting the Scientific Secretariat of the International Rare Disease Research Consortium (IRDiRC);
• Boost public-private research collaboration models;
• Capacity-building and training, for researchers, but also clinicians and patients. 

To align with the broader EU strategy on rare diseases research, ERDERA will host a launch event on 28 October, featuring contributions from representatives of the European Commission, Ministries of Health and Research, the ERDERA management and patient organisations. 

Background

The area of rare diseases has been long recognised as a field where EU and international collaboration is an indispensable condition to progress. For more than two decades the European Union (EU) has supported research into rare diseases with around €4.4 billion allocated to single and multi-partner projects through its Framework Programmes (FPs) for Research and Innovation (R&I).

The EU has supported the field extensively, from 2007-2020 under the 7th Framework Programme (FP7) and Horizon 2020, with more than €3.2 billion made available to more than 550 interdisciplinary and multinational research consortia bringing together the complementary expertise needed, which no individual research institution or country could possess alone. As such, the EU supports the formation of research networks with the participation off universities, research organisations, healthcare providers, SMEs, industry, and patient organisations from across Europe and beyond.

The EU has also supported coordination between research funders across Europe and beyond since 2006. ERDERA consolidates those efforts and builds upon lessons learnt and research capabilities developed under the predecessor co-funds, E-Rare-3 and the European Joint Programme on Rare Diseases (EJP RD), but also other EU-funded research projects such as Solve-RD and the coordination and support action ERICA. These projects have been key in delivering many concrete tools and results to know rare diseases and their symptoms, to help clinicians better diagnosing rare diseases and treating rare disease patients as well as to train researchers, clinicians and patients on all complex aspects related to rare diseases. 

More information 

The European Rare Diseases Research Alliance (ERDERA)

ERDERA Press-Release

Rare diseases

Press contact:

EC Spokesperson for Research, Science and Innovation