What do you need from AGSD-UK?
In 2011 AGSD-UK ran a week-long walking course for people with McArdle disease. It has spread to four countries so far.read more
Would you like to meet other GSD patients? What do you think of small sticky labels with the AGSD-UK tree logo for use in clinic?read more
Are you facing difficulties accessing your treatment? Please complete this survey by 30th September 2019 to enable Eurordis to collate experiences.read more
Reserve your places now! AGSD-UK Conference 2019, Daresbury, Cheshire. Here are details of the expected presentations and workshops.read more
AGSD-UK supported Findacure’s networking event on rare diseases in Cambridge, represented by Gemma Seyfang of the Pompe Support Team.read more
Families attending Great Ormond Street or Birmingham Children’s hospitals are welcome to come along to family days this autumn.read more
A new series from Netflix, in which a doctor crowd-sources diagnoses for mysterious medical conditions, opens with a story mentioning GSD.read more
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
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.