14/12/2017: Update and Closure first survey
The first survey to collect questions from patients, carers and healthcare professionals has been closed. We want to thank all responders for their efforts. We have received 1388 questions from 763 responders representing 58 countries. These questions will be processed and formulated into researchable questions during the national patient day of the Scandinavian Association for liver Glycogen Storage Diseases in 28-29th of April 2018. Afterwards, we will send a second survey to all participants who have indicated that they want to stay involved in the process to prioritize these questions. In a final workshop in 2019 these prioritized questions will be formulated into a Top-10 for liver Glycogen Storage Diseases.
01/10/2017: Survey Launch
The first survey is now launched in which you can contribute with your unanswered questions!
Choose your language:
20/07/2017: Website Launch
The website for the IGSD PSP has been launched!
19/07/2017: James Lind Alliance
The James Lind Alliance launched the page for the IGSD PSP. You can find this page here.
17/06/2017: IGSD2017 – The First Steering Group Meeting
The second part of the First Steering Group Meeting was held. We discussed a lot about the translation of the survey with the Steering Group. We talked about the timeline and the future plans for the IGSD PSP.
16/06/2017: IGSD2017 – The First Steering Group Meeting
The first part of the First Steering Group Meeting was held. The Steering Group met for the first time. We discussed a lot about the goals of the IGSD PSP and the survey.
15/06/2017: IGSD2017 – Presentation Katherine Cowan
Katherine Cowan, our JLA advisor, gave a fascinating lecture on the James Lind Alliance, their goals and the possibilities for the IGSD PSP.