Be Part of a Major Milestone in Rare Disease Research: Join ERDERA’s Launch Event

ERDERA (European Partnership on Rare Diseases) was launched in September 2024 with a remarkable budget of 380 million euros, marking a significant commitment from the European Union, Horizon Europe, and member states. Coordinated by the National Institute of Health and Medical Research (INSERM) in France, this ambitious partnership unites over 170 organisations from the public and private sectors to advance rare disease research and innovation.

ERDERA are holding an event this month to officially present the initiative, which is aiming to transform the lives of 30 million rare disease patients across Europe and beyond.

The event will take place online on 28 October 2024, from 14:00 to 16:15 CET.

Event Highlights

The event will feature a distinguished lineup of speakers, including:

• A representative from the French Ministry of Higher Education, Research, and Innovation 
• A representative from the French Ministry of Health and Prevention 
• Irene Norstedt, Director, People Directorate DG RTD, European Commission 
• Arjon Van Hengel, Deputy Head of Unit, Health Innovations & Ecosystems, European Commission 
• Virginie Bros-Facer, CEO, EURORDIS 
• Prof. Guillaume Canaud, Hôpital Necker-Enfants malades AP-HP, France 
• James Levine, President, Fondation Ipsen 
• Daria Julkowska, ERDERA Scientific Coordinator, INSERM 

About ERDERA

ERDERA is committed to building a robust infrastructure for data and expertise in rare disease research. By fostering innovation in clinical research services, supporting new research projects, and providing training, ERDERA aims to accelerate the translation of research into tangible benefits for patients. The partnership is aligned with national and international rare disease strategies, driving collaboration and ensuring Europe becomes a global leader in rare disease research.

This event marks a pivotal step for this partnership which aims to improve prevention, diagnosis, and treatment options for rare diseases. It is also an excellent opportunity for attendees to engage with thought leaders and policymakers driving rare disease research across Europe.

Registration Information

Don’t miss this opportunity to be part of a transformative initiative that will reshape the future of rare disease research in Europe.

Register now