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Our governance

The AGSD-UK is governed by a Memorandum and Articles of Association. This document sets out the objectives of the charity, how the trustees are appointed, how the meetings are conducted and how the finances are managed.


Elected board of trustees

The management of the company is the responsibility of the Trustees who are elected and/or co-opted under the Articles of Association. Any full member of the Association may be nominated to stand for election to the Board of Trustees. The Trustees have the power to co-opt new Trustees who are then required to stand for election at the next Annual General meeting.

Responsibilities of Trustees

The agenda for each trustee board meeting contains standing agenda items and specific items for discussion. All trustee board meetings and sub-committee meetings are formally minuted and a copy is kept in a secure data file store. The annual report and the financial accounts are filed with Companies House and the Charity Commission and our independent examiners are Crowe UK LLP.

Management and volunteers

The Board of Trustees delivers the strategy and day-to-day administration and management of the charity through the Chief Executive and his/her staff operating out of the AGSD-UK office. They are supported by a range of volunteer co-ordinators supporting individual GSD variants and they meet three times a year for peer support and development in their role.

Broad base for funding

Trustees actively pursue funding from a wide variety of sources and aim for a healthy spread of income streams. As part of this approach our diverse spread of industry donors is reassuring in terms of our financial stability. Trustees recognise that patient organisations and individual patients need to work with industry whilst maintaining impartiality and be explicit about this with regard to treatment approvers as well as funders. To that end AGSD-UK has developed an Impartiality Statement.

Policies and procedures

Underpinning how we operate is a comprehensive set of formal policies and procedures.