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Pompe Disease (GSD2)

Information & Support

After the diagnosis we are ready with a great deal of information, support, friendly contacts and signposting to other services where needed.

Wide range of publications

A wide range of publications is available. Some are published by AGSD-UK
and some by other organisations.


You may find our glossary of terms very helpful in getting to grips with the medical terminology.

Go to the glossary page in a new tab. 

Infantile-onset Pompe disease

  • A Guide to Infantile Pompe disease (2013)
  • Pompedoo (2017)
  • IOPD – A guide for parents of primary age children and schools (2017)
  • Super Pompe Powers

Late-onset Pompe disease

  • 101 Top tips for living well with Pompe disease (2017)
  • Medical overview booklet for professionals (2017)
  • Risk Alert Card for respiratory failure (2017)
  • Pompe – The Inside Story (2017)
    Includes: Breathing and Pompe leaflet
    And: Physiotherapy and Pompe leaflet
  • Travelling with ERT – Sanofi Genzyme
  • IPA Connections – a series of leaflets from the International Pompe Association
    Go to the IPA web site.