Abstract
The third international meeting of the Scandinavian Association for Glycogen Storage Disease focused on hepatic glycogen storage disease and was organized for health-care professionals, patient representatives, and representatives from the industry. This report highlights dilemmas in dietary management, differences in monitoring strategies, and challenges with rare disease care, research, and patient participation.
Highlights
The Scandinavian Association for Glycogen Storage Disease (SAGSD) was established in 2011 with a goal of improving care for children and adults with glycogen storage disease (GSD)
The third biannual international SAGSD meeting was conducted in Angelholm, Sweden on May 14 to 15, 2016
This report summarizes the topics presented at this SAGSD meeting as well as discussions on controversies and challenges
Summary
J. Derks, MD, PhD1, Antal Nemeth, MD, PhD2, Katrin Adrian, MD, PhD3, Henrik Arnell, MD, PhD2, Ann Bech Roskjær, RD4, Eva Beijer, MD2, Sebastiaan te Boekhorst, BICT5, Carina Heidenborg, RD2, Marcus Landgren, MD ,PhD6, Mikael Nilsson, RD7, Domniki Papadopoulou, MD7, Katalin Ross, RD8, Elisabeth Sjoqvist, RD7, U Stachelhaus-Theimer, MD9, Ulrike Steuerwald, MD10, Carl-Johan Tornhage, MD, PhD11,12, and David A.
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