Almost all neuromuscular diseases are rare, and so most drugs used for these conditions are “orphan drugs”. Since 2001 a group (Stuurgroep Weesgeneesmiddelen (WGM)) has been appointed by the minister of health to study the problems surrounding orphan drugs and rare diseases. The committee is an independent organization and consists of ten members and one observer. The members are representatives of umbrella organizations for patients and for pharmaceutical companies, physicians and a hospital pharmacist, scientists, a representative of the Dutch medicine evaluation board and a representative of the Dutch health insurances board.
Recently this group has published a document on expert centres for rare diseases. The text gives definitions for expert centres and expert teams. Within the neuromuscular field in the Netherlands several centres already fulfil the suggested criteria. This is an interesting development which might have future impact on the organisation of health care and is directly relevant for rare neuromuscular diseases. For further information we refer to the website of the WGM.
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