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Our volunteers and teams

Many individuals willingly give their time to help and support others with GSD. But there are also some teams working to support their GSD in various ways.

Click on an underlined name to read about the individual.

After the Trustees, our key volunteers are the coordinators who look after each of the GSDs and are the main point of contact.

The role of GSD coordinators

We have an outline of the role that a coordinator can fulfil, but the practicality and extent of this varies enormously between the various GSDs. For example, the number of people in the UK affected by the different GSDs varies from a handful to over 300. Also the information and support needs of those groups varies from almost nothing to major intervention, and the research activity by institutes and the pharmaceutical industry varies form nothing to massive! The activity of coordinators varies accordingly.

Download a PDF of the role and responsibilities of coordinators.

GSD coordinators

For many of our GSDs, especially those with more people diagnosed, we have appointed a voluntary coordinator to be the main point of contact and to drive forward the agenda for their particular GSD.

If your GSD does not have a coordinator and you would like to help, please contact the Chief Executive.

Pompe Support Team

The Pompe Support Team (PST) aims to offer support in confidence to adult Pompe patients and generally promote their interests.

  • Ben Parker
  • Emily Davies
  • Angela Biggs
  • Theo Biggs
  • Simon Gurney
  • Jane Lewthwaite

Full details of the team are set out in the Pompe (GSD2) section.

Cori Action Team Support

CATS is a group of patients and carers who have got together to support those affected by Cori disease. In addition we aim to be active in recognising and promoting the needs of Cori patients with medical staff through the work of AGSD-UK. Members of CATS are spread throughout the UK and have varied experience and interests.

Full details of the team are set out in the Cori (GSD3) section.

McArdle Patient Liaison Panel

The Patient Liaison Panel (PLP) is a group of patients at the nationally commissioned service for McArdle disease and related disorders. They liaise with and advise the multi-disciplinary team at the clinic. They meet twice a year and attend the annual review of the service by the NHS commissioners.

More details of the panel are set out in the McArdle disease (GSD) section.