The Kick Off Meeting was held on the 6th May 2026, it officially launched the OD4RD3 project, coordinated by Orphanet-Inserm and marked the start of a 33 month collaboration to :
- Ensure the production and delivery of the Orphanet nomenclature of RD (ORPHAcodes), updated and adapted to evolution of knowledge and coding needs, including the need for interoperability of RD data in health and research systems.
- Accompany and promote the RD codification expansion in ALL European MS, by providing human and technical support for implementation, actual adoption and codification in a harmonised standardized way across Europe.
- Collaborate closely with ERNs so their expertise and data collected in registries contributes to knowledge generation and dissemination through a constantly improved Orphanet knowledge base.
- Contribute to the European RD policy by providing support to the European Commission, the Board of Member States and the ERN coordination for evidence-based decision-making.
The first day gathered 68 participants and was limited to OD4RD3 project partners, allowing for an in-depth discussion of project timeline and planned deliveries. Particular attention was given to the lessons learned from the previous OD4RD2 project in order to refine upcoming activities and translate potential improvements into actionable measures. Importantly with OD4RD3 the geographical coverage of the Orphanet Network Of National Hubs has grown to 24 countries , with New Hubs being launched in Denmark, Greece, Iceland & Luxembourg, and actions are planned in order to support ORPHAcodes implementation also in Member States where there is no active Orphanet team (Hungary, Malta & Slovakia). N.B. Due to the recent timing of the previous project event (the OD4RD2 Final Meeting held in Paris in November 2025), a Kick-Off event involving external stakeholders is planned for fall 2026.
Slide Deck available here:OD4RD3_KOM_VF4publication.pdf
A full report of the meeting will be available in the deliverable page https://od4rd.eu/03-deliverables
Project Partners here: https://od4rd.eu/02-partners
Archive: The OD4RD2 Kick Off Meeting was held on the 13-14 April 2023. The first day of the meeting gathered the Orphanet project partners and was dedicated to discuss the objectives of the project and streamline the action to be carried out by the Orphanet National teams involved in the project. The second day of the Meeting gathered the Orphanet project partners as well as External Stakeholders, including representatitives from 19 different ERNS. This second day was dedicated to present and discuss the OD4RD project achievements, the OD4RD2 planned activities and brainstorm together on the way forward for a better identification of RD in national health systems
The Agenda of the Meeting is available here OD4RD2_KOM_Draft-Agenda_13-14Apr23-forPublication.pdf
The slides presented during the second day of the project are available here: Slides_OD4RD2_KOM_14April.zip
A full report of the meeting is available in the deliverable page https://od4rd.eu/03-deliverables