ERDERA will mark its 1st anniversary with a stimulating online event open to the entire rare disease community. Leading experts in the field of neurology, neurometabolic diseases and patient advocacy will take the floor next 30 October, from 09:00 to 11:20 CET, bringing both scientific and lived experience to the table.
This online event is an integral feature of ERDERA’s 2nd General Assembly. Besides listening to powerful keynote speeches, participants will learn firsthand how the partnership is transforming the future of rare disease research through bold, data-driven, collaborative innovation.
ERDERA scientific coordinator, Daria Julkowska (INSERM) will also share first-hand insights into ERDERA’s first-year achievements, as the partnership moves into its second year towards a shared vision of a stronger European rare disease research ecosystem.
Inspiring speakers
- Fanny Mochel – Professor of Genetics at Sorbonne University, Mochel leads national reference centres for neurometabolic diseases and leukodystrophies in adults and co-leads the MIND team at the Paris Brain Institute. Her research focuses on brain energy deficiencies, identifying biomarkers through metabolomics and metabolic imaging, and developing therapeutic approaches targeting the Krebs cycle. Recently, she has explored the links between physics and metabolism in brain function and disease. Her work in identifying biomarkers and developing novel treatment strategies reflects ERDERA’s commitment to accelerating scientific discovery and improving patient outcomes.
- Bojana Mirosavljević – An internationally recognised rare disease advocate, scientist, and patient leader, Bojana founded the “Life” patient association for children with rare diseases and championed Zoya’s Law, ensuring early diagnosis and improved care for over 4,000 patients. With a background in chemistry, reproductive biology, and embryology, she has presented at the European Parliament, United Nations, and over 150 global conferences. Currently, she directs Advocacy Strategy at ICON’s Center for Rare Diseases, embedding patient perspectives in research and clinical trials worldwide. Her tireless efforts to embed the patient voice into clinical research exemplify ERDERA’s dedication to empowering communities and shaping research that meets real patient needs.
- Yvo Roos – Professor of Acute Neurology and dean of the medical faculty at the University of Amsterdam, Roos pioneered acute stroke care through the founding of the Acute Brain Care Unit in 1996. He has co-led landmark trials including MRCLEAN, MRCLEAN No-IV, and DIRECT MT, and leads large research collaborations such as the CONTRAST consortium and CINTICS. With over 450 publications and multiple prestigious awards, his work has shaped stroke care and research internationally. His work mirrors ERDERA’s vision of fostering multi-centre, cross-disciplinary collaborations to translate research into meaningful clinical impact.
- Daria Julkowska – Scientific Coordinator of the European Rare Disease Research Alliance (ERDERA) and Assistant Director of the Thematic Institute for Genetics, Genomics & Bioinformatics at INSERM, with over 15 years of experience in research and management. Julkowska has developed and implemented collaborations between European research networks, infrastructures, and patient organisations. With a PhD in Molecular Biology, postdoctoral experience in cellular biology, and an MSc in Management of Research, she combines scientific expertise with strategic coordination to advance rare disease research across Europe.
Agenda
09:00 – 09:10 | Welcome speeches
• Yvo Roos, UMC Board Member, Amsterdam, The Netherlands
• Daria Julkowska, ERDERA Coordinator, INSERM, Paris, France
09:10 – 10:00 | Keynote speech (remote)
• Fanny Mochel, Director, Reference Centre for Neurometabolic Diseases,
La Pitié-Salpêtrière Hospital – APHP-Sorbonne University, Paris, France
10:00 – 10:50 | Keynote speech
• Bojana Mirosavljevic, Founder, Zivot-Life Association, Belgrade, Serbia
10:50 – 11:20 | One year of ERDERA achievements
• Daria Julkowska, ERDERA Coordinator, INSERM, Paris, France
Register now!
Don’t miss the chance to be part of an inspiring occasion at the ERDERA Open Session on 30 October 2025, from 09:00 to 11:20 CET.
The session is free to attend, but registration is required. You can register to attend the open session here.
