Our Summer Working Group Meetings and Board Meeting will be held online!
Please note: All times are in CET (Paris time)
Individual agendas and information about each meeting are available below by clicking on the meeting name
Friday 10th July 2020 Disease Working Groups and Cross-cutting Diagnostic Working Groups
12.00-12.10 | Introduction – Rita Horvath |
12.10-12.25 | EURO-NMD Registry – Hanns Lochmüller |
12.25-12.40 | German Mitochondrial Registry – Thomas Klopstock |
12.40-12.55 | Italian Mitochondrial Registry – Michelangelo Mancuso |
12.55-13.10 | UK Mitochondrial Registry – Bobby McFarland |
13.10-13.25 | International Mitochondrial Registry – Holger Prokisch |
13.25-13.50 | Discussion – links across registries |
10.00 – 10.30 SMA – Ludo van der Pol Update new therapies, ENMC workshop on adult onset SMA, update on the successful second International SMA Research Congress, any other issues to discuss 10.30 – 10.50 Patient perspectives – Evy Reviers How to connect national Patient organizations in a European Patient organization What is the influence of the Patient in EMA decision making 10.50 – 11.00 Break 11.00 – 11.20 Euro-NMD Registry Hub – Antonio M Atalaia 11.20 – 11.50 ALS – update multidisciplinary care guidelines, new proposed criteria for ALS and PLS, trial readiness, any other issues to discuss
14:00 – Welcome (C. Verhamme, co-chair) 14:00 – Identification of useful guidelines and consensus statements – C. Verhamme (Amsterdam, Netherlands) and S. Segovia-Kueny (AFM Paris, France) 14:15 – Guillain-Barré syndrome and COVID-19: the French experience – Y. Péréon (Nantes, France) 14:35 – Critical illness neuropathy/myopathy and its Electrodiagnosis – P. Y. K. Van den Bergh (Brussels, Belgium) 15:00 – Reference values in clinical neurophysiology – M. Tannemaat (Leiden, Netherlands) 15:25 – Ultrasound in the diagnosis of peripheral neuropathies – S. Goedee (Utrecht, Netherlands) 15:50 – Closure (P. Y. K. Van den Bergh, co-chair) (speaker times include 5 minutes for discussion)
Saturday 11th July Educational Board, Patient Advisory Board & Main Board Meeting
EURO-NMD Summer Board Meeting 2020
Board Meeting Agenda
14.00 – 14.10 | 1 | Welcome & meet the new ERN Team members by Teresinha Evangelista |
14.10 – 14.20 | 2 | Last board meeting’s action points Q&A by Teresinha Evangelista |
14.20 – 14.40 | 3 | Covid-19 survey results, Q&A by Teresinha Evangelista |
14.40 – 15.00 | 4 | Euro-NMD Registries’ hub Q&A by Hanns Lochmüller & Janbernd Kirschner |
15.00 – 15.15 | COMFORT BREAK | |
15.15 – 15.35 | 5 | Monitoring of the ERN, Q&A by Heike PASCAL |
15.35 – 15.55 | 6 | The new shape of the ERN: New full members, affiliated partners, full members not engaging Q&A by Teresinha Evangelista and Heike Pascal |
15.55 – 16.15 | 7 | Progress in EC’s guidelines project Q&A by Antonio Atalaia |
16.15 – 16.20 | 8 | Farewell by Teresinha Evangelista |
16.20 – 16.30 | 9 | FAREWELL FINALE : The ERN-Euro NMD secretariat has got talent! by Annelies Herman |
See you all in Budapest, for real!
Annual ERN Euro-NMD meeting November 18-20th, 2020