How we did
What do you need from AGSD-UK?
The 5th International GSD Conference (IGSD2019) takes place in Porto Alegre, Brazil, from 14 to 16 November 2019.
Minister at Dept. of Health and Social Care announces a national conversation to understand how to improve care for rare diseases.
Southeastern Trains are planning to trial a scheme next year to help passengers with hidden disabilities, which could include GSD.
Three trustees retired at the AGM, so the board is now down to four members and it is actively seeking new trustees. Can you help?
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.
Always there for me
Very caring, patient, informative, supportive and knowledgeable about McArdle’s. Always good about answering questions anyone has about GSD5 and related health concerns. Been there for me whenever I’ve needed.
Marie Buck, USA
Understanding, supportive and informative
AGSD-UK were a lifeline when I was first diagnosed with Pompe. Understanding, supportive and informative.
Huge thanks for PIP help
Huge thanks to Jane Lewthwaite for all her help and support with my PIP application. Very much appreciated.
Help for first time in 37 years
Dear Andrew, thank you for helping me better understand and accept my condition. It was the first time in 37 years that someone actually helped me to do that and to fully live my life guilt-free.
Christos Panoilias, Greece
You have given me confidence that I have found the right source to turn to if I need to investigate whether I am a carrier of Pompe as well. It is very a comforting thought. Thank you very much.
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!
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.
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.