Welcome

Dear all,

We would like to welcome you to the website for the International Liver Glycogen Storage Disease (IGSD) Priority Setting Partnership.
The International Liver Glycogen Storage Disease (IGSD) Priority Setting Partnership (PSP) is set up to find out what the unanswered questions from patients with Liver GSD, families and healthcare professionals

We want to enable patients, carers, physicians, nurses and dieticians to work together to find what questions about management and care for patients with Liver GSD matter to all. Together, we will set a research agenda to strive towards better management and care of patients with Liver GSD.

The first survey is now open in which you can participate:

http://tiny.cc/IGSD-English
http://tiny.cc/IGSD-German
http://tiny.cc/IGSD-Dutch
http://tiny.cc/IGSD-French
http://tiny.cc/IGSD-Spanish
http://tiny.cc/IGSD-Italian
http://tiny.cc/IGSD-Portuguese

On this site, you will find all the information regarding the IGSD PSP, the James Lind Alliance and the Steering Group and Wider Partners.
Want to contact us directly? Go to the contact page.

We would like to offer our sincerest gratitude for your interest and hope that you will participate!

Kind regards,

Also on behalve of the Steering Group,

Terry G. J. Derks, MD, PhD

Priority Setting Partnership Lead
Pediatrician consultant metabolic medicine
Beatrix Children’s Hospital, Section of Metabolic Diseases
University of Groningen, UMC Groningen, Groningen, The Netherlands