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
Affiliations
- Terry G. J. Derks MD, PhD
- Section of Metabolic Diseases, Beatrix Children’s Hospital, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands
- Antal Nemeth MD, PhD
- Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital, Stockholm, Sweden
- Katrin Adrian MD, PhD
- Department of Pediatrics, The Queen Silvia Children’s Hospital, Gothenburg, Sweden
- Henrik Arnell MD, PhD
- Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital, Stockholm, Sweden
- Ann Bech Roskjær RD
- Division of Pediatric Nutrition, Department of Pediatrics, Juliane Marie Centre, Copenhagen University Hospital, Copenhagen, Denmark
- Eva Beijer MD
- Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital, Stockholm, Sweden
- Sebastiaan te Boekhorst BICT
- PatientConnect, Bilthoven, the Netherlands
- Carina Heidenborg RD
- Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital, Stockholm, Sweden
- Marcus Landgren MD ,PhD
- Scandinavian Association for Glycogen Storage Disease, Limhamn, Sweden
- Mikael Nilsson RD
- Department of Pediatrics, Skåne University Hospital, Lund, Sweden
- Domniki Papadopoulou MD
- Department of Pediatrics, Skåne University Hospital, Lund, Sweden
- Katalin Ross RD
- Glycogen Storage Disease Program, University of Florida College of Medicine, Gainesville, FL, USA
- Elisabeth Sjöqvist RD
- Department of Pediatrics, Skåne University Hospital, Lund, Sweden
- U Stachelhaus-Theimer MD
- Selbsthilfegruppe Glykogenose Deutschland e.V., Marl, Germany
- Ulrike Steuerwald MD
- National Hospital of the Faroe Islands, Tórshavn, Faroe Islands
- Carl-Johan Törnhage MD, PhD
- Department of Pediatrics, Skaraborgs Hospital, Skövde, Sweden
- David A. Weinstein MD, PhD
- Glycogen Storage Disease Program, University of Florida College of Medicine, Gainesville, FL, USA
- DOI
- https://doi.org/10.1177/2326409817733009
- Journal volume & issue
-
Vol. 5
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.
