15th April 2015

International Pompe Day


Pompe Update

Healthcare at Home

Deliveries Statement


GSD Giant 2015 

Annual cyclo-sportive.

6th September 2015

The Petersfield School

100, 64, 32 mile options


GSD Giant website


AGSD-UK Annual Conference 2015


Wyboston Lakes Training Centre
Great North Road, Wyboston, Bedfordshire, MK44 3AL 

(Hotel Website)


Weekend of October  10th and 11th 2015

Provisional Programme:

Saturday Sunday

Noon: Registration and buffet lunch 

GSD Type-specific workshops 

Conference dinner

AGSD-UK Annual General Meeting

AGSD-UK Development update 

GSD Type-specific workshops







Provisional: workshop programmes will available for download closer to the event:


  • Make a Smoothie workshop
    • Smoothies for the dietary needs of all GSDs
  • Art Exhibition
    • International submissions to Genzyme's "Expression of Hope" art project will be shown, including the UK entry by Poppy Murduck
  • Hepatic Workshop, including:
    • Medical Experts Q&A - Raise your most pressing questions with the experts
    • Dr Monica Dambska, Personal Experience of GSD I as a patient and as a physician *New
    • Dr. Ulrike Steuerwald, Hannover: 20 years experience of working with Faroese GSD III families:
      •  The basics of GSD III, VI and IX 

      •  Nutrition and treatment in GSD III, VI and IX

      •  Metabolic control of GSD III

      •  Exercise for GSD III

      •  Emergency Plans for GSD III

    • Dr Nicolai Preisler, Copenhagen: Improving exercise tolerance in metabolic myopathies
    • Dr David Weinstein, University of Florida, Update from the GSD Programme
    • Diane Greene, Dietitian at Salford Royal, Dietary workshop
    • TBC, Cardiovascular training for hepatic GSDs
    • TBC, GSD IX Research
  • Late-Onset Pompe Workshop, including:
    • Medical Experts Q&A chaired by Dr. Mark Roberts, Royal Salford Hospital
    • Ben Parker, Being your own Advocate
    • Ventillation workshop
    • Diane Greene, Dietary workshop (including the FODMAP diet for IBS symptoms)
    • Ed Silk and Kevin Annesley: Exercise Workshop & Hydrotherapy Benefits
    • Audentes Therapeutics, Gene Therapy Update
    • Amicus Therapeutics, CHART Therapy for Pompe
    • Pompe Support Team: Pompe literature review, 10 years of Myozyme
    • Mike Nichols: Educating GPS and other health professionals
    • Newborn Screening update
    • Travelling abroad - facilitated workshop
  • McArdle Workshop, Topics will include:
    • Presentation on the Sodium Valproate trial
    • Presentation on the Triheptanoin Trial
    • Discussion of the ketogenic diet
    • Review of Euromac activities and projects
    • McArdle Walking Courses
    • McArdle Publications
    • World McArdle Association
  • Gala Dinner on Saturday evening


Registration and bookings:

You must register in advance.

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 allan.muir@agsd.org.uk


Directions and travel


Using the Site Map you should aim for the Reception Desk at the Training Centre (Building C). 

All overnight accommodation will be in Building A

The conference rooms are all housed in the Oakley Suite (Building Z).

The dinner on Saturday evening will be held overlooking the lake in the Fountains Restaurant (Building M).