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Tuesday, 25th February 2025

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Recent news

Rare Disease Day 2025 28th February 2025
Research opportunities for people affected by hepatic GSDs. 25th February 2025
Update on the Beam GSD1a programme. 27th August 2024
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Rare Disease Day 2024. 29th February 2024
Cipaglucosidase alfa (Pombiliti®) is accepted for use within NHS Scotland. 12th December 2023
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Update on the DTX401 programme for GSD1a. 16th November 2023
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NICE recommends cipaglucosidase alfa plus miglustat. 15th August 2023
New Continuum of Care Model for McArdle’s. 7th July 2023

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We help individuals and families affected by Glycogen Storage Disease (GSD) by putting people in contact, providing information and support, publishing a magazine and holding conferences, workshops, courses and family events.

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The GSD variants

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