GSDs are all ultra-rare diseases, so it is essential that patients are managed in specialist centres.
Please refer to the following lists of specialist centres for the hepatic GSDs, for infantile onset Pompe disease, and for late onset Pompe disease.
For McArdle disease, and the other very rare muscle GSDs, please refer to the contact details of the:
Be prepared for medical emergencies
Once you are registered with one of these specialist centres there is 24 hour 7 day emergency support and advice available from that centre. The centre will provide you with instructions on how to access that support, such as designated telephone numbers.
- If you are registered with a specialist centre and do not yet have this information, please ask your centre for it.
- Always take your medical information with you when attending for emergency care.
- Check the section on this web site for your particular GSD for any additonal emergency information, and for guidance to print out ready to take with you.
Important note: routine queries should be directed to the patient’s own medical team during standard working hours.