The European Rare Diseases Research Alliance (ERDERA) has officially launched with an ambitious vision to improve the lives of 30 million rare disease patients across Europe and beyond. With an estimated budget of €380 million, this partnership aims to transform how rare diseases are diagnosed, treated, and researched. 

This initiative aligns with FutureNeuro’s mission to accelerate genomic discovery and improve patient care in the rare disease space. Through our active involvement in the Rare Disease Research Catalyst Consortium (RDCat), we aim to bolster rare disease registries and position Ireland as a key hub for clinical trials. Our Deputy Director, Prof. Gianpiero Cavalleri, is leading efforts within RDCat to develop research pathways for patients who have not yet received a diagnosis through traditional healthcare systems. 

A Collaborative Effort Backed by the EU 

ERDERA is supported by Horizon Europe, with contributions of around €150 million from the EU and additional funding from member states and private partners. Led by the French National Institute of Health and Medical Research (INSERM), the alliance brings together over 170 organisations from the public and private sectors to advance rare disease prevention, diagnosis, and treatment. 

A Critical Opportunity 

For FutureNeuro, ERDERA represents a critical opportunity to expand our efforts in patient-driven research. By strengthening data collection and rare disease registries, we are working to ensure that every rare disease patient who wishes to participate in research and clinical trials will have that opportunity. Through RDCat, we will also focus on improving diagnostic pathways for those with undiagnosed rare diseases. 

Pioneering Global Rare Disease Research 

Building on the success of previous EU-funded projects such as SOLVE-RD and ERICA, ERDERA will develop a comprehensive infrastructure to support cutting-edge research and innovation in rare diseases. With a focus on advanced therapies and personalised medicine, ERDERA seeks to position Europe as a global leader in this field. 

Shaping the Future of Rare Disease Research 

ERDERA’s key pillars include: 

• Funding: Providing financial support for collaborative international research projects and clinical trials. 

• Clinical Research Network: Enhancing diagnostics and clinical trial readiness across Europe, with a focus on advanced therapies. 

• Support Services: Establishing data, expertise, and acceleration hubs to streamline research and innovation. 

• International Alignment: Coordinating national and international research strategies and fostering public-private partnerships. 

Upcoming Launch Event 

ERDERA will hold its official launch event on October 28-29, 2024, where its roadmap for the next decade will be revealed. The event will include presentations from the European Commission, the French Ministries of Health and Research, and key leaders from ERDERA and patient organisations. 

With ERDERA, Europe is poised to become a world leader in rare disease research and innovation, fostering global collaboration and bringing new hope to patients across the continent.