Group Coordinators


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This briefing provides some of the background information about the group operating rules and procedures that all groups must follow to be a Dystonia Society Support Group and provides a link to the generic set of rules we have prepared for all groups.

Within this summary of the rules we have included links to additional pages and documents that provide guidance and good practice on how best to implement and follow these rules and procedures.  These operating rules have been developed in consultation with Dystonia Society groups over many years and were developed in their current format in 2012.  They are necessary for a number of reasons:

  • Any group operating as a Dystonia Society Support Group does so under the auspices of The Society’s charity registration and such groups are therefore bound by the rules regulating The Society’s operations and are the legal responsibility of The Society’s Trustees – these rules therefore aim to clearly state these basic rules and provide protection for the Trustees and the organisation and for each of the groups and the group volunteers.
  • Some of the rules may seem like common sense but our group volunteers come from widely varying backgrounds with diverse levels of experience.  The documents aim is to ensure that we all have a common basic knowledge and understanding of the rules that need to be implemented.
  • It is important that people affected by dystonia have some common expectations for Dystonia Society Support Groups – this does not mean that all groups need to be the same but should have a shared purpose and operating values.

The document covers a range of topics and there is further guidance on how to implement the rules covered in the following web pages:

All groups must adhere to these rules and sign an agreement with The Society to say that they will. Each group can ask to amend the rules before finalising their agreement with The Society.  The Society deals with each request individually.

A generic group operating rules document (the basic document used as the base document for all groups agreements) can be downloaded as a PDF document here.

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