Save the date:

 AGSD-UK Conference,
 Wyboston Lakes Executive Centre,  Bedfordshire. 
 20-21 October 2018


 GSD Camp (click here)

 Whitemoor Lakes

 Lichfield, Staffs.

 28-30 September 2018



101 Tips for an easier life with Pompe Disease



Practical tips and straightforward information to help newly diagnosed people and those struggling to manage their condition, or just looking for a few extra tips. Also useful to help explain Pompe to friends and family.
First published July 2016, ISBN 978-0-9569658-2-0. 
160 pages, paperback, AGSD-UK.

Written by the Pompe Support Team

With a Foreword by Dr Mark Roberts

Living with Pompe Disease is challenging in many ways. We pass on practical tips which Pompe people have found to be useful. With contributions from Pompe people around the world. This book will help Pompe people to cope with the stresses they face daily and will also help others understand their limitations.


This handy, pocket-sized book has sections of tips on:

  • Diet & Nutrition
  • Pain & Fatigue
  • Home & Garden
  • Chores
  • Medical & ERT
  • Personal
  • Travel
  • Emergencies
  • Physical Activity
  • Leisure & Hobbies
  • Keeping Positive & Speaking Up
  • Shool, Clollege, Work
  • Family & Friends


Information sections on:

  • About Pompe
  • Pompe Glossary
  • Useful Links
  • About the authors


Printed copies to order

One copy is available free of charge to every diagnosed Pompe person in the UK. (If you have not received one, make sure that we have your correct postal address. Click here to email.) For those overseas and anyone wanting further copies, these are available to order here. List price is £6.00, but it is available from AGSD-UK at £5 plus postage and packing.

Quantity Book only Including post and packing
Postal area: UK Europe RoW†
 1 copy  £5.00  £7.00  £9.50  £11.00
 2 copies  £10.00  £13.50  £17.00  £19.50

Rest of the World.

To order, select your quantity and postal area in the pop up list below, then click on the 'Pay Now' button. On the next page you can pay with a PayPal account or look for the link 'Pay with a Debit or Credit Card' to reveal that part of the page).


If you wish to order more than 2 copies, these are available at the basic book cost plus post and packing costs. Please contact us for a quotation.

Books are posted using the Standard Royal Mail service which suggests delivery times of 5 to 7 days for overseas packages. 

Tracking would add an additional £5 to the postage costs and so is not currently available.

For quotes or for any problems or questions, please contact the Office using our contact form.

Updated: 14/07/2016