MTG Representative Meetings
Endo-ERN Main Thematic Group (MTG) chairs will organise 3 meetings per year (2 online. 1 in-person) to faciliate planning of activities and sharing of information across the network. Attendees of these meetings are the designated representatives from our member reference centres (RCs).
On the menu you will find the planned MTG meetings along with the minutes of past meetings. If you do not know the password for the document please email the project office.
These meetings have a standing agenda covering Work Package (WP) specific activities:
WP1: Management & Coordination
- Plan/provide notice of meetings
- WP specific contact persons
- Emerging topics: Upcoming General Assembly and specific MTG session. Planning of Autumn 2026 MTG meetings.
- New publications/materials to be endorsed/updated/disseminated
- Emerging topics: Rare Disease Day promotion
- Ensure that HCP members are entering data into e-REC for the continuous monitoring process.
- Emerging topics: Number of patients received/referred from other EU countries in 2025. Data no longer requested: Accredited educational activities and all details there in.
- Regular meeting dates review for next meetings
- Any cases for upcoming meetings?
- Need help – contact helpdesk
- Emerging topics: Availability of CPMS 2.0 app. Recurring MTG meetings. New support feature.
Any issues or barriers to using the affiliated registries
Emerging topics: Number of patients received/referred from other EU countries in 2025. Adverse events.
WP6: Education & Training
- Plan and schedule webinars for the next 12 months
- Each MTG is to host 2-3 webinars per year and include Endo-ERN ePAGs
- Endorsed events & training updates of interest
- Emerging topics: Webinar planning – confirm 2026 activity
Emerging topics: Endorsement strategy in development update at GA.
WP8/9: Capacity building and best practice sharing for Ukraine
Emerging topics: Survey for Ukrainian clinicians please share with your contacts. Promote the joint Ukrainian webinar.
Transversal Working Group on Genomic Testing
Transversal Working Group on Transition of Care
Transversal Working Group on Research
If you are interested in getting involved please the contact project office
Any other business from your RC/HCP/organisation
- Research/information you want to share