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McArdle Disease (GSD5)

Information & Support

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

We have many links to more information and support

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.

Please report broken links to the Webmaster.

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.