ERDERA: Transforming Rare Disease Research in Europe
Imagine having a disease so rare that doctors struggle to diagnose it, researchers have little data to study it, and treatments are scarce. For the 30 million people in Europe living with a rare disease, this is a daily reality. But change is happening.
ERDERA’s Coordinator, Daria Julkowska, Participates in Rare Disease Moonshot Debate Hosted by Euronews
The Innovating for Impact: Shaping the Future of Rare Disease Treatment event, hosted by Euronews and organised by Rare Disease Moonshot, brought together key figures in rare disease advocacy to discuss the future of treatment in Europe.
Be Part of a Major Milestone in Rare Disease Research: Join ERDERA’s Launch Event!
ERDERA 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 organizations from the public and private sectors to advance rare disease research and innovation.
ERDERA Scientific Coordinator Daria Julkowska Highlights Goals for Rare Disease Research in Europe
In a recent interview with Science Business, ERDERA Scientific Coordinator Daria Julkowska discussed the upcoming launch of the European Rare Diseases Research Alliance (ERDERA), its mission, and its critical role in advancing rare disease research across Europe.
“I hope ERDERA solidifies the mindset that no single group—be it clinicians, patients, researchers, public authorities, or private entities—can succeed alone”
My name is Alexandre Méjat. I’m a patient by birth; I’m affected by a rare disease called Bethlem myopathy. I’m also a scientist by training: I have a PhD in biology, and I represent AFM-Téléthon in ERDERA, which is a patient organisation from France dedicated to neuromuscular diseases—but more broadly to all rare diseases. READ MORE