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

Phillip Cammish

phillip.cammish.please.remove@ncl.ac.uk

IT

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.

marcel.heidemann.please.remove@lrz.uni-muenchen.de