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Summit of Pen y Fan

McArdlers: Caoimhe, Eóghan, Bronte, Sarah
and Elisa.

Young Peoples walking course – Wales

IMPROVING LIVES

Not English speaking?

   

Our website is prepared in English, but the “Languages” button explains how to you can configure Google Chrome browser to automatically translate our site into your choice of about 160 languages.

 

We have instructions in:
• 中国人 / Chinese • Deutsch • English • Español • Français • हिंदी / Hindi • Italiano • Português.

MUSCLE GLYCOGEN STORAGE DISEASE

CAMPAIGNS
Our campaigns of activity and awareness raising.

IamGSD campaigns for early diagnosis of McArdle’s and other mGSDs, the adoption of international standards of care and the provision of centres of expertise.

 

PUBLICATIONS

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IamGSD has publications in English (and a few other languages) to support people with McArdle disease, their families, schools, employers and doctors. 

RESEARCH
Our research agenda for muscle GSD.

IamGSD works to identify the needs of people affected by McArdle disease and other muscle GSDs, and to stimulate, encourage and support research efforts to meet these needs.

 

COURSES

Learning management techniques on a walking course.

IamGSD promotes walking courses to help people improve their condition. These have so far been held in the USA, UK and Germany, with more countries to be included in future. 

Main sections

NEWS  NEWS  NEWS  NEWS

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June 2026

AGSD-UK GLISTEN MAGAZINE SPRING 2026

AGSD–UK has published its Spring edition of “Glisten” magazine. This has several articles specific to muscle GSDs. T
• The McArdle’s Experience – walking courses.
• Welcome to Dr Chiara Pizzamiglio, new clinical lead at the national McArdle disease service.
• Retirement of Dr Richard Godfrey, exercise physiologist with the McArdle’s  clinic.
• Gina’s McArdle’s journey – website information led to a diagnosis.
• How we monitor McArdle’s research.

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May 2026

THE McARDLE‘S EXPERIENCE COURSES

This year's two courses by AGSD-UK are now fully booked! The first week for young people (with flexibility on age and a parent attending with under 18s), and the second week for adults. Both in the Pembrokeshire National Park in south west Wales. All the details on the AGSD-UK website. More info is downloadable, and there is an explanatory video and a second video of responses from past course members. Keep an eye out for details of 2027! 

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February 2026

INTERNATIONAL RARE DISEASE DAY 2026

February 28, 2026. Focused on raising awareness for the over 300 million people living with rare conditions globally. The year's campaign centers around the themes of "More Than You Can Imagine" and "Equity for rare" to highlight systemic healthcare inequities.


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Help us build awareness. 
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