The AGSD-UK 2015 conference was a great success:

I can't thank you and the AGSD-UK team enough for the superb organisation of the conference this year! The workshops and range of speakers was fantastic. It was so good to meet the key physicians who are helping with the condition. Another incredible outcome of the conference was that our daughter made two friends the same age as her whom we intend to meet with and to keep in contact with. As the condition is rare it is invaluable that she has friends to share her struggles with. It is also great that my husband and I now have friends who are GSD parents too! What a fantastic thing you do - thank you so much, from all of us!
– Victoria


AGSD-UK Conference 2016

Tortworth Court Hotel
Wotton-Under-Edge, Gloucestershire

(Hotel Website)


Weekend of October  15th and 16th 2016

ProvisionalProgramme: workshop programmes are printed at the foot of this page


Registration and bookings

You must register in advance, preferably before September 12th 2016

Conference registration and accommodation should be booked using the forms below or through the AGSD-UK. 

Online Registration Forms:


For further guidance please contact the office on 0300 123 2790 or email


Directions and travel

Hotel travel directions for car, bus, train, and helecopter are available here:


 Programme (provisional)


Saturday 15th October

Restaurant lunch at 12 noon, conference opens at 1pm

Welcome - Mike Porter, Chairman AGSD-UK
Looking Back: 30 years of AGSD-UK - Past AGSD-UK Officers
Knowledge, Value, and Patients -  Koichi Mikami, Edinburgh University
Patient Reflections -  Esther James
GSD I Ketotic-GSD
0, 3, 6, 9
Pompe McArdle
A Spanish Perspective - Nerea López Maldonado Research Update - David Weinstein Research Update - TBD Welcome to the newly diagnosed, introductions and "Get to know you". Andrew Wakelin
Research Update - Dr David Weinstein Basics of Ketotic GSDs - Ulrike Steuerwald Homecare panel discussion  
Diabetes and GSD - TBD Substrate Reduction Therapy for GSD III - David Chung, Dover LifeSciences Pompe Nutrition - TBD Latest exercise approaches, and details of the "Third Wind" study. Dr Richard Godfrey
Liver Transplants in children - TBD Interpretation of Laboratory Controls -
Ulrike Steuerwald
Physiotherapy - Ed Silk, Ayfer Kahraman, Nicola Condon The national picture for diagnosis, numbers and care provision. Andrew Wakelin

Conference Dinner with Guest Speaker  - Kevin O'Donnell

Sunday 16th October

Session starts at 9am

AGSD-UK AGM - Mike Porter, Chairman
AGSD-UK Update and Fundraising Report - Allan Muir, Charity Director
Welcome to Ethics - Dr. John H. A. Dyck (DPhil) Oxford, VP Canadian Association of Pompe Patients
GSD I Ketotic-GSD
0, 3, 6, 9
Pompe McArdle
History of Glycosade -  VITAFLO International

Pompe Support Projects - Pompe Support Team & Jane Lewthwaite

Update on the Sodium Valproate trial and other research developments. Dr Renata Scalco
Q&A with Dr Weinstein AGSD-UK Publications - 101 Tips for Liver GSDs Bridging The Gap - Hannah Chalmers, MD-UK What can patients know better than doctors. Andrew Wakelin

Looking to the Future -

A-Z of Fundraising

Ketotic GSD Quiz Mental Health and Wellbeing - Anabel Raigor  


 Conference closes at 1pm - Buffet lunch is provided - Rooms available to continue discussions