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 (Subject to change)

Saturday 15th October


Registration and Lunch



 12 noon to 1pm

 Conference opens 1pm

1pm  Welcome - Mike Porter, Chairman AGSD-UK
Historical perspectives of AGSD-UK - Sue Del Mar, Andrew Wakelin
Knowledge, Value, and Patients-  Koichi Mikami, Edinburgh University
Patient Reflections -  Esther James, Andrea Duckworth
3pm Workshops
GSD I Ketotic-GSD
0, 3, 6, 9
Pompe Muscle GSD
A Spanish Perspective - Nerea López Maldonado Research Update - Dr. David Weinstein Research Update Welcome to the newly diagnosed, introductions and "Get to know you". Andrew Wakelin
Research Update - Dr David Weinstein Basics of Ketotic GSDs - Ulrike Steuerwald, Hanover Homecare panel discussion  Progress in the German speaking countries - Monika Weingartz
Plans for an international muscle GSD organisation - Andrew Wakelin
GSD Services, Bristol  -  Dr Efstathia Chronopoulou Substrate Reduction Therapy for GSD III - David Chung, Dover LifeSciences Physiotherapy - Ed Silk, Ayfer Kahraman, Nicola Condon How I got here from there - a GSD VII and ketosis story from the US. Jeremy Michelson
Sharing Experiences - All Interpretation of Laboratory Controls -  Ulrike Steuerwald   What can patients know better than doctors?
Andrew Wakelin
7pm Conference Dinner with Guest Speaker  - Kevin O'Donnel
Sunday 16th October      
9:00  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, Vice President of Canadian Association of Pompe Patients
Assistant Professor in Political Studies, Trinity Western University, Pre-Law Advisor and Coordinator
11:30  Workshops
GSD I Ketotic-GSD
0, 3, 6, 9
Pompe Muscle GSD
Disraeli Palmerstone Asquith Kipling (1st Floor)
Chair - Lisa Adams Chair - Esther James Chair - Allan Muir Chair - Andrew Wakelin
History of Glycosade - Tiina Heinonen-Kirk, Eoghan Brennan
Vitaflo International Ltd
  Specialist Support Advice, Jane Lewthwaite, Pompe Specialist Care Advisor. Update on the Sodium Valproate trial and other research developments. Dr Renata Scalco
Q&A with Dr David Weinstein AGSD-UK Publications - 101 Tips for Liver GSDs Bridging The Gap - Hannah Chalmers, Latest exercise approaches and the "Third Wind" study.  Dr Richard Godfrey
Looking to the Future - A-Z of Fundraising Funding the Future Mental Health and Wellbeing - Anabel Raigor The national picture for diagnosis, numbers and care provision. And launch of new leaflet 'At Work with McArdle’s'. Andrew Wakelin
Closing Remarks and Vote of Thanks - Mike Porter, Chairman AGSD-UK
Buffet Lunch