Coming up:

 IGSD Conference,
The Netherlands,
15-17 June 2017.

 

 Walking with McArdle's course,
 North Wales,
 2-9 August 2017.

 

 AGSD-UK Annual Conference,
Nottingham,
28-29 October 2017.

 

UK Clinic for GSD Type VII (Tarui)

Secretary to Dr Ros Quinlivan
MRC Centre for Neuromuscular Diseases
National Hospital for Neurology and Neurosurgery
Queen Square
London WC1N 3BG

Direct line: 020 3448 8132
Switchboard: 0845 155 5000 ext. 88132
Enquiries to: enquiry.mcardle@uclh.nhs.uk

GPs referring a diagnosed patient:
for assessment, advice, management and support, send a referral letter to the above.

Professionals referring for diagnosis:
Please visit the web site and download the pre-referral form: McArdle Disease and related conditions.

Everyone in the UK with a diagnosis of GSD Type VII can be referred to this specialist service at the MRC Centre for Neuromuscular Diseases, part of the National Hospital for Neurology and Neurosurgery in Queen Square, London WC1. Dr Ros Quinlivan is the lead clinician.

This service is provided within the nationally commissioned service for McArdle Disease (GSD Type V) and related conditions. It is an invaluable resource for the patient community and is a centre of excellence with over 100 patients. Only a small number have GSD Type VII and the clinic tries to see all those on the same day, so that they have an opportunity to meet each other if they so wish.

There is significant benefit for patients (and their families) in getting together at these clinics. But perhaps even more importantly the clinic approach enables patients to be seen by a range of professionals in one visit. The clinic includes neuromuscular consultant, physiotherapist, exercise physiologist, dietician and psychologist.

By concentrating patients at one specialist centre the professionals concerned build their understanding of the disease through seeing as many patients as possible. Having a group of patients also enables the possibility of future research projects and clinical trials.

The AGSD-UK encourages everyone with a diagnosis of GSD Type VII to ask their general practitioner to refer them to this specialist clinic. Contact details are given above.