Summit of Pen y Fan
McArdlers: Caoimhe, Eóghan, Bronte, Sarah
and Elisa.
Young Peoples walking course – Wales
LEBEN VERBESSERN
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MUSKEL-GLYKOGEN-SPEICHERKRANKHEIT
NACHRICHTEN
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.
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!
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.
Join the community.
Help us build awareness.
Share your photos, videos and experiences!
Download materials