24 Jul 2019
Authors:
1st ENMC European meeting: The EURO-NMD pathology working group Recommended Standards for Muscle Pathology Amsterdam, The Netherlands, 7 December 2018
European Reference Networks, ERNs, were established by the EU commission in December 2016 in order to enhance the access to accurate diagnostics and disease management for patients with rare disorders. EURO-NMD is the dedicated ERN for neuromuscular patients since all the hundreds of different neuromuscular disorders are rare diseases. EURO-NMD has an established structure with 61 centres currently members of the EURO-NMD organisation and with 10 different working groups (WG) on different areas of the clinical aspects of neuromuscular diseases. The ‘Neuromuscular Pathology Working Group’ is one of these WGs with the explicit task of increasing availability of high quality muscle and nerve pathology diagnostics in Europe for the benefit of the patients.(…) The result of that work was a preliminary version of such recommendations, which was then sent out to 32 muscle pathology experts in different EURO-NMD centers who were listed as being interested to take part in the WG activities. 16 of these pathologists responded with further comments on the draft for recommended standards. In order to continue the final discussion of these responses and to decide on a final version of the Recommended Standards, a one-day ENMC sponsored meeting was approved and scheduled for 7 December 2018, located at the Schiphol airport meeting facilities in Amsterdam, the Netherlands.