The 2nd International Conference on Clinical Research Networks for Rare Diseases will take place on 9–10 December 2025 in Heidelberg, Germany, with full hybrid access for participants worldwide. This edition features a distinctly hands-on format, placing delivery at the centre. Each session —plenary and workshops alike— will close with agreed action points that will be captured live and turned into a single roadmap with input from panellists and participants.
Co‑organised by Rare Diseases International (RDI), the International Rare Diseases Research Consortium (IRDiRC) and the European Rare Diseases Research Alliance (ERDERA), the event is designed to turn collective expertise into clear next steps towards clinical advances in rare diseases. While full hybrid access is available, participants are encouraged to join in person in Heidelberg to network and contribute directly to the action‑oriented sessions.
In‑person attendance is free. However, all participants must secure their place via the online registration link here and are asked to indicate in‑person interest during registration as places are limited.
The full programme is available here. It sets the stage for two days of focused, constructive exchange across research, clinical practice, patient advocacy, industry and policy, bringing together perspectives essential to rare diseases—from real‑world evidence to models of care and patient engagement.
A hands-on format that builds on a shared roadmap
The meeting will foster a set of priorities and near-term milestones that attendees can disseminate further within their networks. This pragmatic approach, which recognises the diversity of contexts across Rare Diseases, is creating the steps that can be adapted locally while remaining interoperable globally.
Key details
- Date: 9–10 December 2025
- Location: Heidelberg, Germany, with hybrid access
- Registration: here (required for all participants; you may indicate interest in attending in‑person)
- Co‑organisers: RDI, IRDiRC, ERDERA
- Programme: here
What to expect in Heidelberg
The programme opens with a plenary on real‑world evidence and data collection that examines quality, interoperability and regulatory expectations, drawing on agency, collaborative and academic viewpoints. A second plenary explores new approaches in diagnostics and clinical research, including data‑driven discovery and translational methods, offering a grounded view of what can be implemented now and what requires coordinated effort to scale.
Day two begins with parallel workshops. One focuses on ensuring representation from low‑ and middle‑income countries in registries and clinical research data, looking at infrastructure, governance and sustainable partnerships. The other addresses rules of engagement in multi stakeholder, pre-competitive environments—how to collaborate earlier and more effectively while maintaining trust, clarity and fair benefit.
The reporting back plenary will synthesise the workshop outputs. The afternoon will be dedicated to enabling global trials with local impact and will close with lessons from global networks and models of care, including the Duchenne experience.
If you wish to join in person in Heidelberg, do indicate this during registration; in‑person attendance is free, though places are limited, some are currently available. Otherwise, please indicate that you wish to attend the event online, using the same registration form here.
For full details, consult the programme here.
