Registry Team

This registry is operated by the Institute of Genetic Medicine, Newcastle University. Hosting is provided by the Friedrich-Baur-Institut, Klinikum der Universität München (University of Munich hospital).


Curator of the UK FSHD Patient Registry

Ben Porter


Marcel Heidemann

Marcel Heidemann is the software engineer for this and the other patient registries for rare neuromuscular diseases which are organised by the Friedrich-Baur-Institute in Munich. Please contact him if you have any technical questions or interest in this software.