Presented by

Dr. J. Andoni URTIZBEREA

A number of networks have emerged in the field of neuromuscular disorders in the recent years. Not only at the regional/national/continental levels but more importantly at the international level. Scientists followed by clinicians pioneered this type of interactive organizations. These networks dedicated to myology are useful for data and information sharing, dissemination of knowledge and translational research.

All stakeholders are now part of these networks: patients and caregivers as well as healthcare professionals, scientists and pharma. Some networks have a wide scope while other are more focused on one single neuromuscular disease (Duchenne muscular dystrophy or SMA, for instance) or one specific topic. Some are very formal, structured organizations with governance rules and distinct business models while others rely simply on social media for instance.

The advent of cheap, reliable and accessible communication technologies has greatly facilitated the implementation of such networks although safety and data control remain a concern in some instances. For many emerging countries, it has been a unique opportunity to join the rest of the myology community with more flexible rules than with international learned societies. The forthcoming challenges of networking are the risk of duplication and excessive competition.

Examples of successful networks such the TREAT-NMD Alliance, EURO-NMD, EVELAM and more recently MENA-MYO will be addressed during the presentation.