Poster presentation on a study towards an understanding of how patients learn to live with McArdle disease in daily life.

Introducing the six campaigns agreed by our board which guide our work in pursuit of our objectives.

It is so important to be able to advocate for yourself, or have a family member do it for you.

What it is, what happens, “second wind”, symptoms, impact and management strategies.

Report on the clinic and the research programme at the UK McArdle Disease Service, London.

Poster presentation on the development of this tool, and the clarity it brings to the optimal care for patients with McArdle disease.

Background and update on the various avenues of international  research into McArdle disease.

Avoiding and managing pain in McArdle disease. Pain is not a given part of the condition.

Key underlying factors, immediate ATP, the four Rs, “second wind”, the 6-second rule, 30 for 80, rest before risk and the McArdle Mantra

The causes, treatments, risks and outcomes of an episode of rhabdomyolysis. 

An introduction to the many different resources freely available from IamGSD.

More detail on the various avenues of international  research into McArdle disease.

An account of the development of the walking courses over the last 7 years, with some great photos. It covers the successes and the benefits, plus the start of the Children & Parents event.

An introduction to each macro nutrient and encouragement to see what works for you.

Patients have first hand experience of the condition, they understand it from a practical viewpoint.