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Our projects

Always on the lookout for ways to improve the lives of the UK GSD community, each year we seek to deliver improvement projects.

Improvements come in many different forms, including: the introduction of new services, an extension to existing services, the creation of specific literature, the implementation of relevant technology, the support of improved interaction between individuals and groups and supporting relevant research studies/trials.

While not an exclusive list these are just some of the areas that we seek to raise or secure funding for, in order to create improvement projects that deliver demonstrable benefits for the UK GSD community.

Previous projects include:

The Trustees are currently developing the next 5 year plan. Projects in the previous plan include:

  • Develop and deliver an AGSD-UK Roadshow.
  • Obtain funding for and recruit an additional Specialist Care Advisor.
  • Extend income from charitable foundation grants.
  • Improve engagement with young GSD members, including recruiting a young trustee in the 18-30 age range.
  • Promote and enhance the new website.
  • Recruit a webmaster to lead the web site team.
  • Develop and implement a comprehensive plan for our social media.
  • Establish a Pompe diet/nutrition research project.
  • Develop guidelines for diagnosis and management of hepatic GSDs.
  • Hold a series of expert training days.
  • Strengthen our management and operational capability.
  • Develop a project to improve the diagnostic pathway.

Further details will become available as the projects are developed.  Completed projects will be reported as News items, and will be included in our Annual Reports.

See our previous Annual Reports.