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Have you read the latest news?
Progress on NICE assessment of new treatments.
An update on the appraisal of treatments for Pompe by NICE.
Nigel Walker runs London Marathon to support AGSD-UK.
Well done to Nigel Walker who has completed the 2021 London Marathon.
Winter Season of GSD talks and events coming soon.
This year AGSD-UK will again be offering a series of talks and presentations
Louise Bett.
AGSD-UK are deeply saddened to learn of the recent passing of Louise Bett.
Homecare and Coronavirus.
An article full of FAQ’s that will be of interest to anyone who is extremely vulnerable and is receiving homecare.
COVID-19 vaccination for children and young people aged 12-17 years.
It is recognised that a small number of children and young people aged 12-17 years with specific underlying health conditions may be at risk of COVID-19 and should be offered a COVID vaccine.
Lived experience advisory panel.
Could you represent the rare experience on this new venture from The Patient Association?
Whole Genome Sequencing for newborn screening.
Genomics England have released findings that show the public are generally supportive of using whole genome sequencing for newborn screening.
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.
What do you need from AGSD-UK?
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?
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.
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.
Educational materials
Thank you so much for sending me the educational materials. They are so helpful to our patients in the Adult Metabolic Diseases Clinic, Vancouver General Hospital.
Margaret O’Riley, Metabolic Nurse Educator, Canada
Very helpful
Thank you, this is very helpful! Thanks again for your time and resources!
RC, Germany
Vast knowledge
I really appreciate your vast knowledge and willingness to share.
AS, UK
Thank you very much
Thank you very much because following the appointment with the specialist I was at the point of giving up my search for a diagnosis.
DN, France
Thank you for translations
I want to thank you for giving attention and care to translations for a country such as mine, with a small population and very scarce cases of McArdle disease. It means a lot.AS, GreeceImpressive website
When I recently went on your web site, I was very impressed with the layout and the information.JC, USAWorldwide support
Thank you so much Andrew, you’re always very kind and helpful. It can be a great help for me and for others all around the world.
BM, Sweden
McArdle’s support
We haven't spoke in quite awhile and you are my go to person when it comes to questions about McArdle’s. I do appreciate you going out of your way to get information for me.
MM, USA
Staying in touch
Thank you for staying in touch with me. I'm deeply appreciative of all you do for everyone with a GSD.
Stan, USA
Mental Wellbeing and Pompe Disease Booklet
It seems to have something for everyone and I particularly liked the toolkit and Annabel’s story. It is lovely, detailed and the feedback from patients has all been very positive. All the models of therapy mentioned are ones I advocate and I am sure it will benefit all patients to hear about the importance of looking after your mental health and wellbeing and the variety of psychological help that could be made available to them as well. No health without mental health is a phrase I like and this leaflet captures that well.Mental Health professionalThank you so much Jane and Julie
I am over the moon with the PIP decision and I cannot thank Jane & Julie enough for all the great help you have given me. I am sure the fact the award is given until December 2030 is a sign of the in depth work that was done by yourselves. Thank you so much for all your help with the PIP.RL, UKIOPD Schools information booklet
Thank you, the IOPD Schools information booklet is brilliant! Definitely give us other things to think about and will provide support for explaining Pompe to the schools.TB, Mum to a lovely IOPD toddlerAGSD-UK were a huge help
It has been confirmed that I do not have a GSD. I do however want to say a big thank you for your support when I reached out to you, greatly appreciated. AGSD-UK were a huge helpAS, UKThank you Jane for your time and your good advice
Thank you so very much. I can't tell you what it means to me for the advice you have provided. I am a great believer that once you know the name of an ailment, you can look to see how to deal with it and quite often feel relieved with optimism as to the future living with any condition.MG, UKMindful Decisions
As a relative novice in this area I can’t speak highly enough about the course! The pace of the lessons and the way in which the modules are structured really help one to progress, allowing you to see how your understanding is growing with every week. I particularly liked the concept of “mindful decisions”, something which I hope to bring into both work and home life moving forwardJohn Lee Taggart, Niemann-Pick UKThank you Jane
I've no idea how to properly thank you Jane, for all you've done for my mother. If there is anything I can do for you and the AGSD please let me know!Jon W-IInvaluable help
I very much appreciate your support during this challenging time. Thank you so much for being there for me. It means more than I can say, your help has been invaluable; I don't know how I would have managed without your help and support. I sincerely appreciate your generosity.Maryam Ahmed, UKHelp with benefit forms
Julie Jackson has been great, really helped me with the benefit forms, a lovely lady.Thank you for your help too.Wendy Barker, UKProfessional support and guidance
I am very grateful to both of you for your excellent professional support and guidance with filling in forms and writing supporting letters.
The work you do and the support you give makes such a difference to people lives. I appreciate the time and effort you have given to help me.Eileen Rice, UK
Correct diagnosis after 29 years
Big thanks to Andrew for pointing me in the right direction to figure out why I was so different to other McArdle people. I felt a huge relief when I got my correct diagnosis of GSD6, Hers disease, after 29 years. I am now better equipped to manage my condition.
Steve Wills, USA
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.