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.
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.