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Update on phase 3 study of DTX401.

Update on phase 3 study of DTX401.

Ultragenyx have provided the following community update on the phase 3 study of DTX401, their investigational gene therapy for the potential treatment of GSDIa. GSD1a Community Update

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Rare Disease Day 2024.

Rare Disease Day 2024.

Today is Rare Disease Day! This rarest of days, 29th February is a great opportunity to raise awareness about rare conditions. Visit https://www.rarediseaseday.org/ to find out more about how to get involved in this international campaign. Thanks go to all our...

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Virtual Festive Event.

Virtual Festive Event.

AGSD-UK is holding a Virtual Festive Event on the 9th of December at 1.00pm. Come along and make sure you wear a Festive hat, as there will be a prize for the best headgear. We will have a Quiz and time for everyone to catch up. For more information, please contact...

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Newborn Genomes Programme.

Newborn Genomes Programme.

GSDs on list of conditions for inclusion in Newborn Genomes Programme research study. Genomics England has published an initial list of conditions that will be screened for as part of their forthcoming Generation Study, which includes some GSDs. The study will...

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If you have a GSD news story message us or see Notes for contributors.

Read some personal stories

Do you have an interesting personal story to tell? Just message us or visit the Notes for contributors.

For personal stories on an individual GSD, visit the page for that GSD.

What and who we are

  • National support group for those affected by Glycogen Storage Disease (GSD) and their families.
  • Membership based with an elected board of trustees.
  • A company limited by guarantee and a registered charity.
  • Collaborators with UK rare disease and international GSD groups.

Keep in touch

Register FREE with AGSD-UK to keep in touch with the latest developments and future conferences, workshops, courses and fundraising events. It helps you keep in touch with other patients and families. You will receive our magazine, Glisten, by email.