OD4RD2 project holds final meeting
The Orphanet Data for Rare Disease 2 (OD4RD2) project, led by Orphanet, held its final meeting on 5 and 6 November 2025 in Paris, France. OD4RD2 was launched in 2023 as a 3-year project to build on and expand the achievements of the previous OD4RD pilot project (2022). Its main objectives are to contribute to the generation of standardised, interoperable data on rare disease diagnoses for primary and secondary use; to contribute to the harmonisation of data collection among multiple settings and countries; and to contribute to supporting evidence-based decision-making in the frame of the European strategy around the European Reference Networks (ERNs).
The first day of the OD4RD2 final meeting was limited to project partners and the Orphanet Network, allowing for an in-depth discussion of project achievements and the timeline of the previous months. The goal of this session was to fine-tune upcoming activities and identify potential improvements. Particular attention was given to the lessons learned from the Network of National Hubs. The meeting also served as an opportunity to present the proposed objectives of the new OD4RD3 project and to reflect on areas for enhancement.
Day two brought together 61 participants, including all project partners and representatives from 17 ERNs, the European Health and Digital Executive Agency (HaDEA), the DG SANTE, ERDERA and JARDIN. The aim of this second day was to broaden the scope of the meeting and ensure comprehensive coverage of all relevant topics by fostering collaborative brainstorming and actively inviting stakeholder feedback to capture all needs.
The morning session was dedicated to presenting and discussing the OD4RD2 project’s achievements and their impact on different stakeholders. Particular attention was also given to the lessons learned from the Network of National Hubs and their work to support local implementation of ORPHAcodes in national health systems. The afternoon followed with two rounds of parallel working groups, designed to facilitate brainstorming with ERNs on potential unmet needs and gaps that sould be addressed in the final months of OD4RD2 and in OD4RD3. Discussions focused on:
- Improving scientific collaboration with ERNs, including nomenclature and scientific information;
- Supporting ERN registries, particularly in transforming their data into reusable knowledge;
- How to enhance Orphanet’s contribution to the dissemination of ERN coding guidelines and other knowledge;
- How to further support the implementation and adoption of ORPHAcodes in Member States in parallel with the actions of National Hubs and JARDIN.
Overall, the two days provided a comprehensive and forward-looking platform for reflection, exchange, and strategic planning. They laid a solid foundation for the next OD4RD3 project, ensuring that future work will continue to advance harmonised RD codification across Europe, enhance scientific collaboration with ERNs and data usability, and support high-quality, interoperable knowledge generation for the benefit of the entire rare disease community.
