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McArdle Disease (GSD5)

Information & Support

A wealth of information and guidance is available online and in printed form, plus there is support from the McArdle’s Coordinator and opportunities to meet others affected by McArdle’s.

Links for information and support for McArdle Disease

The following links may be of interest to those learning about McArdle disease. Links should open in a new tab or window in your browser.

Please note, AGSD-UK cannot be held responsible for the content of external websites, social media channels, blogs, etc.

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Information and support

Lots of information, events and campaigning on the website of the  International Association for Muscle Glycogen Storage Disease (IamGSD)
.

Visit the IamGSD website.

Euromac is an international registry of patients affected by McArdle’s and other rare neuromuscular glycogenosis where exercise intolerance is the main symptom.
 It also has books and information in eight languages and a directory of McArdle doctors across Europe.

Visit the Euromac website.

Muscular Dystrophy UK (MDUK) lists McArdle’s as one of its many conditions and has a factsheet on the disease
. MDUK can offer assistance with patient advocacy on issues such as employment support.

Visit the Muscular Dystrophy UK website.

Medical resources

Nature: Clinical Practice Neurology – McArdle Disease, what do neurologists need to know?https://www.nature.com/articles/ncpneuro0913

PatientPlus – an article on McArdle disease aimed at GPs
https://patient.info/doctor/mcardles-disease-glycogen-storage-disease-type-v#notes

A rather technical article on GSD and McArdle’s – GSD5
https://emedicine.medscape.com/article/119777-overview

Online Mendelian Inheritance in Man – in depth genetic and medical information
http://www.omim.org/entry/232600 

Research

Report of ENMC workshop: Diagnostic criteria and management strategies for McArdle Disease, 2015
http://www.enmc.org/publications/workshop-reports/211/
Report of ENMC workshop: Outcome measures in McArdle Disease, 2006
http://www.enmc.org/publications/workshop-reports/outcome-measures-mcardle-disease/

Miscellaneous

Who Named It? – information on Brian McArdle

and the muscle condition named after him.

Wikipedia – entry on McArdle Disease (GSD5)