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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.

Projects achieved in 2018 include:

AGSD-UK Calendar 2019 – our first ever calendar, with photos and quotes from members of the GSD community. A perfect gift and at the same time help to raise some funds and promote the cause.

“Be Inspired, Eat Well” the recipe book from AGSD-UK, 60 pages, A5, full colour. Written by people with GSD for people with GSD, it gives a whole range of options for meals and for treats and snacks. Each recipe gives the breakdown for carbs, protein and  fat.

The recipe book can be ordered here.

“Top Tips” – our first publication for GSD3, Cori disease. We believe this is the first book ever published worldwide for people affected by this condition. Distributed free to people in the UK affected by GSD3, but also available for the purchase of extra copies and for people abroad.

Please contact the AGSD-UK office.

“Pompe Disease Medical Overview”. The second in our series of medical overview booklets helping to guide GPs and other medical professionals helping to support someone with a GSD – this time Pompe disease (GSD2). Distributed free to people in the UK affected by Pompe disease. Extra copies may be purchased and orders accepted from around the world.

Please contact the AGSD-UK office.

Projects for 2019/21 include:

The Trustees have set out our 2019/21 business plan, in line with our objectives. Projects in the 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.