Journal of Inborn Errors of Metabolism and Screening (Sep 2017)

Hepatic Glycogen Storage Diseases

  • Terry G. J. Derks MD, PhD,
  • Antal Nemeth MD, PhD,
  • Katrin Adrian MD, PhD,
  • Henrik Arnell MD, PhD,
  • Ann Bech Roskjær RD,
  • Eva Beijer MD,
  • Sebastiaan te Boekhorst BICT,
  • Carina Heidenborg RD,
  • Marcus Landgren MD ,PhD,
  • Mikael Nilsson RD,
  • Domniki Papadopoulou MD,
  • Katalin Ross RD,
  • Elisabeth Sjöqvist RD,
  • U Stachelhaus-Theimer MD,
  • Ulrike Steuerwald MD,
  • Carl-Johan Törnhage MD, PhD,
  • David A. Weinstein MD, PhD

DOI
https://doi.org/10.1177/2326409817733009
Journal volume & issue
Vol. 5

Abstract

Read online

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.