ERDERA

Hybrid AI Decision Support for Empowering People in Dynamic Situations

Basic information

Call: HORIZON-HLTH-2023-DISEASE-07
Project number: 101156595
Type of Action: Horizon Research and Innovation Actions
Granting Authority: European Commission
Duration: 1.9.2024 – 31.8.2031

Website: https://erdera.org/

About

The European Rare Diseases Research Alliance (ERDERA) is transforming rare disease research in Europe, aiming to improve the lives of 30 million affected individuals. With a €380 million effort under Horizon Europe, ERDERA unites nearly 180 partners from 37 countries to advance prevention, diagnosis, and treatment. The initiative builds on the achievements of previous programs, such as the European Joint Programme on Rare Diseases (EJP RD), Solve-RD, and ERICA, to create a comprehensive and integrated ecosystem for rare disease research.

What is the problem the project is addressing?

Rare diseases affect millions, yet fragmented knowledge, data, and resources delay progress in prevention, diagnosis, and treatment. Limited collaboration and unaligned strategies between national and regional efforts further slow advancements. These issues prevent the effective use of digital technologies and AI to enhance patient outcomes. ERDERA addresses these challenges by creating a coordinated framework for rare disease research.

How is it solving the problem?

ERDERA fosters collaboration and innovation by aligning research strategies, promoting public-private partnerships, and streamlining the journey from discovery to patient care. Its components include joint transnational calls for research projects, the establishment of a Clinical Research Network to enhance clinical trial preparedness, and knowledge sharing services. By leveraging digital tools, AI, and enhanced collaboration, ERDERA reduces fragmentation and accelerates the translation of research into practical solutions for patients.

Expected Tangible results

ERDERA is committed to transforming rare disease research and care in Europe with clear goals. It aims to enable faster diagnosis, with identified rare diseases diagnosed within six months or included in a global diagnostic pipeline for unknown disorders. The alliance seeks to expedite the development and approval of 1,000 new therapies, addressing the 95% of rare diseases currently lacking treatment options. This involves enhancing clinical trial readiness and regulatory pathways to accelerate therapeutic advancements.

ERDERA will promote a holistic approach to rare disease research, integrating knowledge, data, and resources to reduce fragmentation. By leveraging advanced digital tools, data analysis, and AI methods, the partnership aims to solve undiagnosed cases, understand disease progression, and design innovative clinical trials. Furthermore, ERDERA will empower patients as equal partners in research, providing resources, training, and structured engagement frameworks to involve them in governance and implementation.

The initiative will also enhance the capabilities of stakeholders through education and capacity-building programs, offering online training for researchers and clinicians. By breaking silos and fostering a multinational, multi-stakeholder ecosystem, ERDERA will strengthen collaborations, attract resources, and ensure coherence through robust governance and advisory structures. These efforts will establish Europe as a global leader in rare disease research and innovation, delivering tangible health benefits and boosting EU competitiveness.

PROJECT PARTNERS

ERDERA unites research institutions, healthcare providers, patient organizations, industry leaders, and policymakers in a multidisciplinary alliance to advance rare disease research. With nearly 180 partners from 37 countries, the partnership combines resources and expertise to tackle the challenges of rare diseases effectively. For more information about the consortium, visit the official ERDERA website.

CONTACT

International Research Centre
on Artificial Intelligence (IRCAI)
under the auspices of UNESCO

Jožef Stefan Institute
Jamova cesta 39
SI-1000 Ljubljana

info@ircai.org
ircai.org

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