What do you need from AGSD-UK?
Keep up-to-date – AGSD-UK now posts to Twitter the intro to our news stories, with a link to each full story.read more
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
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
In line with AGSD-UK’s strategic plan and succession planning, we are pleased to announce the appointment of a Chief Executive Officer.read more
On Sunday 4 August follow our cyclists around the 100 mile RideLondon course – download the free app to your iOS or Android smartphone.read more
The Walking with McArdle’s course, and the Children & Parents event, were a great success in the Pembrokeshire National Park, Wales.read more
GSD and Me – Vitaflo have launched a new website resource for five of the most common liver GSDs – 0, 1, 3, 6 and 9.read more
Children and families from North East England got together for a Family Fun Day at the Royal Victoria Infirmary, Newcastle.read more
Use the scroll links to move back and fore through our news stories.
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.
Advice and expertise
I can’t express how grateful we are to Andrew Wakelin for his superb advice and support. And to Jane Lewthwaite, without whose professional expertise, dedication and hard work we’d be at a loss. So a very heartfelt ‘Thank you’.
Welcome… and thanks
Welcome Neil, looking forward to seeing AGSD-UK develop further under your leadership. Many thanks to Allan for all your hard work and support over the 8 years since I was diagnosed. Best wishes to you and Barbara.
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
Forever in my mind
I enjoyed the photos of the walking course this year. I will always be grateful for my week in Wales. What I learned from you will forever be in the back of my mind.
Lorraine Baguley, Australia
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!
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.
Help with diagnosis
I really appreciate all your help and support, even though my daughter’s diagnosis was not a muscle GSD.
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.
Thanks AGSD-UK. I properly loved Wales, such a wonderful time, the most beautiful weather and lovely friends.
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.
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.
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.