the ERDERA-GDI Official Joint Workshop, scheduled to take place on Monday, 14 October 2025, from 13:30 to 17:30 CET at the Novotel Paris Centre Tour Eiffel (https://all.accor.com/hotel/3546/index.fr.shtml). In person attendance is highly encouraged but hybrid access for remote participants is also possible.
This strategic half-day workshop will convene distinguished contributors from both the European Rare Diseases Research Alliance (ERDERA) and the Genomic Data Infrastructure (GDI) initiatives. The objective is to foster alignment, disseminate updates, and explore collaborative opportunities in the use case of rare disease.
Workshop Objectives
- Provide a high-level overview of ERDERA and GDI initiatives, including current activities and strategic goals
- Share updates on technical progress, ethical and regulatory aspects, and national program developments
- Discuss the Rare Disease Use Case and its relevance for federated analysis and data harmonization
- Identify opportunities for mutual support and demonstration projects
- Decide action items and outline next steps for continued collaboration
Participants
The workshop will bring together representatives from:
- ERDERA Data Services Hub Workstream (DSH)
- ERDERA National representatives from France, Sweden, Denmark
- GDI Pillars II and III
- 1+MG RD European Working Group
- Genome of Europe
- CAD (Central Data Analyzer)
- ELIXIR Europe
Confirmed participants include: Daria Julkowska, Serena Scollen, Juan Arenas, Sergi Beltran Agullo, Philippe Jean Bousquet, Julien Thevenon, Morris Swertz, Gerieke Been, Steven Laurie, Antonio Rausell, Angela Saenz Monroy, Manon Lebras, Bengt Persson, Frédérique Nowak, Gisele Bonne, Emmanuelle Genin, Salvador Capella Gutierrez, Carles Hernandez-Ferrer, Dylan Spalding.
Location: Novotel Paris Centre Tour Eiffel. 61 quai de Grenelle, 75015 PARIS, France
Hybrid Access: Join the meeting here
Meeting ID: 368 170 006 413
Passcode: zC7ks2UH
Agenda
Welcome & Opening Remarks (5min)
ERDERA and GDI Overview/Initiatives (25 min)
- Speakers: Daria Julkowska, Serena Scollen
Current Status & Future Plans (1h 15 min)
- Content: Updates, ongoing work, and strategic direction
- Chairs: Bengt Persson, Julien Thevenon
- Speakers:
- GDI Ethics and regulatory aspects, Juan Arenas (10 minutes)
- GDI current status, technical overview and future plans, Dylan Spalding (10min)
- 1+MG RD Use Case, Sergi Beltran Agullo (10min)
- Questions & Answers for GDI/1+MG (5min)
- ERDERA DRW overview, Lisenka Vissers (10min)
- ERDERA RD federated analysis use case (10min)
- ERDERA DSH: the current status and technical overview, Morris Swertz (10min)
- Questions & Answers for ERDERA (5min)
Coffee Break (30min)
Current Status & Future Plans – cont. (20 min)
- GDI/ERDERA update per country (current status and future plans of national personalized genomic medicine programmes, data management, data analysis)
- France (Philippe Jean Bousquet, Frédérique Nowak) (5min)
- Sweden (Bengt Persson) (5min)
- Denmark (Asuman Zeynep Tümer) (5min)
- Joint Q&A (5min)
Discussion: Opportunities for Mutual Support & Demonstration Projects (1h)
- Focus: Collaboration, project opportunities, and use case discussion
- Co-chairs: Sergi Beltran Agullo, Carles Hernandez-Ferrer
Action Planning & Wrap-Up (including Closing Remarks) (20 min)
- Finalize action items, responsibilities, and next steps.
- Chairs: Morris Swertz, Juan Arenas