The European Rare Diseases Research Alliance (ERDERA) has been prominently featured in the recent edition of Échos de l’Europe. This publication explores ERDERA’s, inception, its pillars and roadmap, highlighting collaborative efforts aimed at improving the lives of rare disease patients across Europe. 

It includes an editorial by Elli Chatzopoulou, and interviews with ERDERA’s scientific coordinator Daria Julkowska and Orphanet Director, Ana Rath. 

A new era in rare disease research 

The article explores ERDERA’s potential to reshape rare disease research through an extensive partnership model that also includes the private sector. ERDERA aims to unite resources, knowledge, and services to accelerate the prevention, diagnosis, and treatment of rare diseases. With an ambitious budget of €380 million, ERDERA aims to improve the lives of 30 million rare disease patients across Europe and beyond. This partnership, supported by the European Union under the Horizon Europe framework and backed by numerous member states, is led by INSERM (the French National Institute of Health and Medical Research) and includes over 170 organisations from both public and private sectors. 

Insights from key leaders 

In her editorial, Chatzopoulou highlights how ERDERA aims to position Europe as a global leader in the field by integrating cutting-edge scientific research with a collaborative international framework, thereby setting a new standard for addressing rare diseases worldwide. 

Daria Julkowska shares ERDERA’s ambitious goals which focus on the need for streamlined diagnostics, enhanced data sharing, and collaborative research across Europe. One of ERDERA’s key objectives is to reduce the current diagnostic timeline for rare diseases from four years to just six months. Julkowska also underscores the importance of an engaged community of patients, researchers, and institutions, committed to delivering tangible, real-world impact on patients’ lives. 

In a separate interview, Ana Rath, discusses the vital role of Orphanet in improving rare disease data interoperability across Europe. Since its inception in 1997, Orphanet has become an essential resource, standardising rare disease terminology and fostering better coordination across European health systems.  

ERDERA’s roadmap for the future 

ERDERA hosted it’s official launch event on October 28-29, 2024, where key stakeholders, including representatives from the European Commission, the French Ministries of Health and Research, and various patient organizations, gathered to discuss the alliance’s strategic vision. The event outlined ERDERA’s roadmap for the next decade, focusing on strengthening collaboration, driving innovation, and improving patient outcomes. 

Looking ahead, ERDERA’s next major milestone is the Joint Transnational Call (JTC) for Proposals 2025, which will open on December 10, 2024. This call invites research teams from across Europe and beyond to submit collaborative projects focused on “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – development and validation”. 

Read full publication here.