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I am newly diagnosed and need information.
What are the sources of help and support?
In what ways can I support AGSD-UK?
What are the sources of medical guidance?
How do I find policies, finance, reports?
Have you read the latest news?
Do you have a GSD news story? Just message us, or see the relevant section of Notes for contributors.
Please post comments below each news story.
Help your child enjoy a hospital visit!
Families attending Great Ormond Street or Birmingham Children’s hospitals are welcome to come along to family days this autumn.
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Netflix series “Diagnosis” refers to GSD.
A new series from Netflix, in which a doctor crowd-sources diagnoses for mysterious medical conditions, opens with a story mentioning GSD.
read more
Follow our news stories on Twitter.
Keep up-to-date – AGSD-UK now posts to Twitter the intro to our news stories, with a link to each full story.
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In Wales? Contact your Assembly Member.
AGSD-UK supports Genetic Alliance UK in establishing a Cross-Party Group in the Welsh Assembly to support patients with rare, genetic conditions.
read more
New private DIY option for CK blood tests.
There is now a private option for Creatine Kinase (CK) blood tests, with blood taken yourself at home and posted to the lab.
read more
Strategic development for growth, services and support.
In line with AGSD-UK’s strategic plan and succession planning, we are pleased to announce the appointment of a Chief Executive Officer.
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Sponsor our cyclists on Prudential RideLondon Event.
On Sunday 4 August follow our cyclists around the 100 mile RideLondon course – download the free app to your iOS or Android smartphone.
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Great success for walking course and children’s event.
The Walking with McArdle’s course, and the Children & Parents event, were a great success in the Pembrokeshire National Park, Wales.
read moreUse the scroll links to move back and fore through our news stories.
Read some personal stories
Do you have an interesting personal story to tell? Just message us or visit the Notes for contributors.
Amanda Porter
Pompe
GSD2
GSD2
Walker twins
GSD9a
Sue Davey
Pompe
GSD2
GSD2
Ciara Harkins
Von Gierke
GSD1a
GSD1a
Caroline Holdstock
Hers disease
GSD6
GSD6
Trushal Pindolia
Von Gierke
GSD1a
GSD1a
Jae Machin
GSD9
Marilyn Silver
Tarui disease
GSD7
GSD7
Mylo Moore
Cori disease
GSD3a
GSD3a
Andrea Duckworth
Pompe disease
GSD2
GSD2
John Davey
McArdle disease
GSD5
GSD5
Michael Taylor
Tarui disease
GSD7
GSD7
Jeanne Graham
McArdle disease
GSD5
GSD5
Jennifer Howells
McArdle disease
GSD5
GSD5
Anosha Kahn
Cori disease
GSD3
GSD3
Sam Murduck
Pompe Disease
GSD2
GSD2
Vicky Clarke
Pompe disease
GSD2
GSD2
Andy Williams
McArdle disease
GSD5
GSD5
Nikki Christie
Cori disease
GSD3
GSD3
Mike Nicholls
Pompe disease
GSD2
GSD2
David Thompson
McArdle disease
GSD5
GSD5
Tony Mitchell
Pompe disease
GSD2
GSD2
Margaret Carter
McArdle disease
GSD5
GSD5
Melissa
McArdle disease
GSD5
GSD5
You tell us how we did…
It is really valuable for staff, volunteers and members to hear feedback on our efforts. Please use the “Message us” form.
Professional expertise
I am so lucky to get to know your organization and be exposed to other professional expertise, and most importantly get to learn from patients’ stories.
Medical professional, UAE
Inca Trail
The organisers of the Inca Trail trek to Macchu Pichu have accepted the letter you wrote and I am now cleared to go. Thank you so much, you are a star!
Deborah Corcoran
Thanks to Allan
Huge, huge thanks to Allan. Your dedication and hard work made an incredible difference. Welcome Neil. Hope to see you all at the conference.
Doris Noe
Help with diagnosis
I really appreciate all your help and support, even though my daughter’s diagnosis was not a muscle GSD.
Anonymous mother
Letter of support
Thank you for writing the letter of support! I can’t begin to express how grateful I am. I feel confident that I will now be taken much more seriously.
Rebecca, USA
Children’s event
Thanks AGSD-UK. I properly loved Wales, such a wonderful time, the most beautiful weather and lovely friends.
Rachel Thomas
Walking course
Thank you for once again arranging a wonderful week of walks, fun and friendship. We are indebted to you for all that you do for us.
Sioned Williams
Publications and posts
We are learning a lot with you and your writings! Your work is changing the way people see illness, not only McArdle’s, but others. Never will thank you enough.
Dina, Portugal
Start
Your ways to donate
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 goups.
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.