The detailed report (along with links to presentation slides and additional resources) of the 2024 ERN eUROGEN Strategic Board Meeting, held virtually on 24 September 2024, is now accessible here for members and stakeholders.
This pivotal meeting addressed a range of essential topics and set the groundwork for ongoing collaborations and future initiatives to improve care for rare uro-recto-genital diseases and complex conditions.
Key Highlights from the Meeting:
1. Coordination and Governance
- Updates were shared on the smooth transition to the new Coordinator, supported by a dedicated Transition Protocol.
- Presentations emphasised the importance of grant management, with clear objectives and deliverables for the 2023-2027 period.
2. Patient Advocacy
- The European Patient Advocacy Group (ePAG) highlighted their achievements in amplifying patient voices and integrating patient-reported outcomes into the network’s activities.
3. Mental Health Initiatives
- A presentation by EURORDIS underscored the mental health challenges faced by individuals with rare diseases, with plans for new tools and surveys to address unmet needs.
4. Cross-Network Collaborations
- The meeting emphasised partnerships with other ERNs, European organisations, and research alliances to enhance knowledge sharing and impact.
5. Data and Evaluation
- Discussions on data collection and monitoring explored innovative solutions to improve reporting quality and assess the network’s performance effectively.
6. Training and Education
- An expanded programme of accredited webinars and specialised surgical training initiatives was outlined, aiming to equip the next generation of healthcare professionals.
7. Clinical Guidelines and Best Practices
- Progress was presented on developing Clinical Practice Guidelines and Clinical Decision Support Tools for various rare and complex conditions.
8. Support for Ukraine
- The webinar series for Ukraine demonstrated a strong commitment to knowledge transfer and care support, with new programmes planned to bridge care gaps.
Looking Ahead
The meeting concluded with a renewed call for collaboration and a focus on advancing patient care, education, and research. While budget constraints necessitate virtual meetings, attendees explored options for hybrid formats to accommodate future needs.
We encourage all members to review the report to stay informed about the network’s progress and initiatives.
For further inquiries or suggestions, please contact the ERN eUROGEN Coordination Team.
