Liver Glycogen Storage Disease (International)

The International Hepatic Glycogen Storage Disease (IGSD) Priority Setting Partnership (PSP) was set up to find out what the unanswered questions from patients with Liver GSD, families and healthcare professionals are. The IGSD PSP was initiated at the International Glycogen Storage Disease Conference from 15-17th of June 2017, Groningen, The Netherlands.

The first question-gathering survey received 1,388 questions from 763 responders.  

The International Hepatic Glycogen Storage Disease PSP Top 10 was published in October 2019

For more information on the PSP:

Facebook page: https://www.facebook.com/Igsdpsp
Twitter: https://twitter.com/igsdpsp

The Top 10 Priorities

Articles and publications

Key documents

International Liver Glycogen Storage Disease PSP Protocol

International Liver Glycogen Storage Disease PSP Question Verification Form

International Liver Glycogen Storage Disease PSP Engagement Summary