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Have you read the latest news?
Happy New Year 2020!
Happy New Year from AGSD-UK to members and friends around the world. Here’s to great progress for GSD in 2020.
Neil Bradbury has stepped down from role of CEO.
The AGSD-UK board of trustees announces that Neil Bradbury has stepped down from his role as Chief Executive Officer.
NICE seeks lay members for technology evaluation.
NICE are looking for lay members to join their highly specialised technologies evaluation committee.
Eurordis H-Care Survey of rare diseases.
AGSD-UK supports the Eurordis-led initiative of a survey of care in rare diseases across Europe. It takes just 10 minutes!
Christmas lights – a special gift for AGSD-UK.
Frank and Irene Green from Altrincham for years have decorated their home with festive lights, this year raising money for AGSD-UK.
UN Volunteer Day – join our web team?
On this UN International Volunteer Day of 5th December, AGSD-UK asks “Could you volunteer to join our web team?”
AGSD-UK social media gets a shake up!
Rowena Barnard has taken on managing AGSD-UK’s social media, on a volunteer basis, and it has sprung into life.
Photos from our Annual Conference.
Gary Thompson sends some photos he took of the fun and the business at our Annual Conference and AGM over 5/6 October.
Use the scroll links to move back and fore through our news stories.
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.
Nina Contreras D’Agosto
GSD1b
Esme and Dexter
Andersen
GSD4
GSD4
Julia László
Andersen
GSD4
GSD4
John Foxwell
Pompe
GSD2
GSD2
Alphie Wretham
GSD9a
Chloe Donald
Von Gierke
GSD1a
GSD1a
Ruben Briggs
GSD9a
Amanda Porter
Pompe
GSD2
GSD2
Walker twins
GSD9a
Sue Davey
Pompe
GSD2
GSD2
Ciara Harkins
Von Gierke
GSD1a
GSD1a
Caroline Holdstock
Hers
GSD6
GSD6
Trushal Pindolia
Von Gierke
GSD1a
GSD1a
Jae Machin
GSD9
Marilyn Silver
Tarui
GSD7
GSD7
Mylo Moore
Cori
GSD3a
GSD3a
Andrea Duckworth
Pompe
GSD2
GSD2
John Davey
McArdle
GSD5
GSD5
Michael Taylor
Tarui
GSD7
GSD7
Jeanne Graham
McArdle
GSD5
GSD5
Jennifer Howells
McArdle
GSD5
GSD5
Anosha Kahn
Cori
GSD3
GSD3
Sam Murduck
Pompe
GSD2
GSD2
Vicky Clarke
Pompe
GSD2
GSD2
Andy Williams
McArdle
GSD5
GSD5
Nikki Christie
Cori
GSD3
GSD3
Mike Nicholls
Pompe
GSD2
GSD2
David Thompson
McArdle
GSD5
GSD5
Tony Mitchell
Pompe
GSD2
GSD2
Margaret Carter
McArdle
GSD5
GSD5
Melissa
McArdle
GSD5
GSD5
Personal stories
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.