15-17 June 2017.
Walking with McArdle's course,
2-9 August 2017.
AGSD-UK Annual Conference,
28-29 October 2017.
Secretary to Dr Ros Quinlivan
MRC Centre for Neuromuscular Diseases
National Hospital for Neurology and Neurosurgery
London WC1N 3BG
Direct line: 020 3448 8132
Switchboard: 0845 155 5000 ext. 88132
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 Service.
The AGSD-UK is very pleased to support the UK McArdle Service, where Dr Ros Quinlivan is the lead clinician.
The service is located in London at the MRC Centre for Neuromuscular Diseases, part of the National Hospital for Neurology and Neurosurgery. (It was established in 1996 in Oswestry and moved to London in 2011.)
This is the UK’s only clinic for McArdle disease and patients travel from all over the country, and indeed also from other countries. It is an invaluable resource for our patient community and is a centre of excellence with over 160 patients. In fact, we understand that no other country operates a clinic such as this, with patients elsewhere usually being seen individually by neuromuscular consultants. Some countries are hoping to adopt the UK model.
There is significant benefit for patients and 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 of different disciplines in one visit. Through seeing so many patients they build their understanding of the disease.
The AGSD-UK encourages everyone with a diagnosis of McArdle disease to ask their general practitioner to refer them to the UK McArdle clinic. For those in England and Scotland this service is nationally funded and there is no charge to your GP, for other parts of the UK your GP or health authority will be charged for your visit.
Important note: If you cannot attend an appointment please advise the clinic at least 4 days in advance so that someone on the waiting list may be invited in your place. Unused appointments threaten the funding of the clinic.
Association for Glycogen Storage Disease (UK) LimitedRegistered Charity No 1132271