Neuromuscular disorders in Asia and Oceania: A history of the Asian and Oceanian Myology Center (AOMC)

摘要

In 1971, individual patient/parent organisations in Europe convened the European Alliance of Neuromuscular Disorders Associations (EAMDA).1 Eventually, as the success of EAMDA grew, members of its executive board, Ysbrand Poortman of the Netherlands (Vereniging Spierziekten Nederland, VSN), Govanni Nigro of Italy (Unione Italiana Lotta alla Distrofia Muscolare, UILDM) and Reinhardt Rüdel of Germany (Deutsche Gesellschaft für Muskelkranke, DGM) began to envisage the establishment of a European centre of excellence for the initiation and co-ordination of neuromuscular research.2 By late 1987, Poortman, as vice-president responsible for medical research, was presenting the case to the EAMDA board. Together with Bernard Barataud and Pierre Birambeau (the initiators of the very financially successful Telethon of the Association Fran?aise contre les Myopathies, AFM), and support from the Muscular Dystrophy Group of Great Britain and Northern Ireland (MDGGB), the idea of the centre was realised in mid December 1988.2 The first workshop of the European Neuromuscular Centre (ENMC) was held in Paris on the 18th of February 1989. Of significance here, is that Alan Emery was employed by the fledgling ENMC as its Research Director from 1st April 1990.2 Funding of ENMC has been provided through contributions from European national patient/parent and other organisations. The aims of ENMC have been to hold workshops on specific neuromuscular diseases (NMDs) in relation to diagnostic criteria, genetic screening, disease registers, tissue banking, clinical trials, biomarkers, outcome measures and standards of care. Subsequently, numerous publications have been produced.