A significant new initiative aimed at improving the lives of millions of rare disease patients across Europe and beyond has officially begun with the launch of the European Rare Diseases Research Alliance (ERDERA). Supported by the European Union’s Horizon Europe programme, ERDERA is set to change the landscape of rare disease research, with a substantial budget of €380 million.
Led by INSERM (France), ERDERA brings together over 170 organisations from both the public and private sectors. This ambitious partnership will advance research in prevention, diagnosis, and treatment for rare diseases, ultimately building on the foundations of previous projects like the European Joint Programme on Rare Diseases (EJP RD).
With Europe housing 30 million rare disease patients, the urgency to improve their diagnostic journey and offer viable treatments is more important than ever. ERDERA aims to achieve just that by integrating knowledge, resources, and services into a unified system to boost clinical research and drive innovation in the field.
A Collaborative Approach to Rare Disease Research
ERDERA’s work will focus on three major objectives:
- Comprehensive Support: Offering a range of services and resources, from research networks to data hubs, to ensure researchers have the tools they need to make meaningful advancements.
- Patient-Centred Research: Every patient with a rare disease should have the opportunity to participate in relevant clinical studies, paving the way for more targeted and effective treatments.
- Innovation and Global Leadership: ERDERA is committed to driving research forward through cutting-edge technologies such as AI and digital health tools, positioning Europe as a leader in rare disease innovation.
Daria Julkowska, ERDERA’s scientific coordinator, described the vision: “Our mission is to bring together expertise, boost clinical research by connecting patients to trials, and stimulate innovation, all while aligning efforts across Europe.”
Global Collaboration at Its Core
The strength of ERDERA lies in its collaborative nature. Over 1,400 professionals from various disciplines, including clinical research, drug development, biostatistics, and patient engagement, are coming together to drive this initiative. Importantly, ERDERA will work closely with the European Reference Networks (ERNs), which provide expert care for rare disease patients across Europe.
Official Launch Event in October
To officially present its roadmap for the coming years, ERDERA will host a launch event on 28-29 October 2024. Representatives from the European Commission, the French Ministries of Health and Research, ERDERA leadership, and patient organisations will all be in attendance. The opening session, on 28 October at 14:00 CET, will be open to the public and press via online streaming.
For updates on ERDERA’s work and to learn more about the event, visit the ERDERA website.
Press Contact: Gisela Pairó – gpairo@teamitresearch.com
ERDERA’s launch marks a pivotal moment in rare disease research. With a clear focus on collaboration, innovation, and patient-centred approaches, the alliance is set to create lasting change for millions of people affected by rare diseases worldwide.