Legal notice


The UK FSHD Patient Registry, accessible on the web at, 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).

UK FSHD Patient Registry
Institute of Genetic Medicine
Newcastle University
International Centre for Life
Newcastle upon Tyne
United Kingdom
Tel. +44 (0) 191 241 8640

Klinikum der Universität München
Ziemssenstr. 1a
80336 München
Tel. +49 (0) 89 5160-7400
Fax +49 (0) 89 5160-7402



Patient registry software architecture and programming by Marcel Kiel

Webdesign, application design and illustrations by Ricarda Kiel

Icons by Mark James / famfamfam


All the information and advice on the UK FSHD Patient Registry website has been assembled to the best of our knowledge. However, in any individual case consultation with the attending doctor or other qualified health professional is strongly recommended. The registry website contents are for informational purposes only and not intended to be a substitute for independent professional medical advice, diagnosis or treatment. All users of the registry website are responsible for their own medical care, treatment and oversight.

Although the greatest possible care has been taken in compiling the registry website, we cannot guarantee that all the information provided on these pages is accurate. Friedrich-Baur-Institut or Newcastle University assume no liability for the accuracy of the registry website contents and will not be held responsible for any loss, damage or inconvenience caused as a result of any inaccuracy or error within these pages.

Friedrich-Baur-Institut and Newcastle University also assume no liability for the contents and their accuracy on any third party websites that are accessible through links via the UK FSHD Patient Registry website. These links are provided purely for your convenience, and do not imply that Friedrich-Baur-Institut or Newcastle University support the information given on those pages.