Hepatic Glycogen Storage Diseases: Toward One Global Collaborative Network

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

doi:10.1177/2326409817733009

Hepatic Glycogen Storage Diseases: Toward One Global Collaborative Network

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

^*Corresponding author af dette arbejde

Afdeling for Børn og Unge

9 Citationer (Scopus)

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.

Originalsprog	Engelsk
Tidsskrift	Journal of Inborn Errors of Metabolism and Screening
Vol/bind	5
ISSN	2326-4098
DOI	https://doi.org/10.1177/2326409817733009
Status	Udgivet - 25 sep. 2017

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10.1177/2326409817733009Licens: CC BY

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Derks, T. G. J., Nemeth, A., Adrian, K., Arnell, H., Roskjær, A. B., Beijer, E., te Boekhorst, S., Heidenborg, C., Landgren, M., Nilsson, M., Papadopoulou, D., Ross, K., Sjöqvist, E., Stachelhaus-Theimer, U., Steuerwald, U., Törnhage, C. J., & Weinstein, D. A. (2017). Hepatic Glycogen Storage Diseases: Toward One Global Collaborative Network. Journal of Inborn Errors of Metabolism and Screening, 5. https://doi.org/10.1177/2326409817733009

Derks, TGJ, Nemeth, A, Adrian, K, Arnell, H, Roskjær, AB, Beijer, E, te Boekhorst, S, Heidenborg, C, Landgren, M, Nilsson, M, Papadopoulou, D, Ross, K, Sjöqvist, E, Stachelhaus-Theimer, U, Steuerwald, U, Törnhage, CJ & Weinstein, DA 2017, 'Hepatic Glycogen Storage Diseases: Toward One Global Collaborative Network', Journal of Inborn Errors of Metabolism and Screening, bind 5. https://doi.org/10.1177/2326409817733009

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AU - Derks, Terry G.J.

AU - Nemeth, Antal

AU - Adrian, Katrin

AU - Arnell, Henrik

AU - Roskjær, Ann Bech

AU - Beijer, Eva

AU - te Boekhorst, Sebastiaan

AU - Heidenborg, Carina

AU - Landgren, Marcus

AU - Nilsson, Mikael

AU - Papadopoulou, Domniki

AU - Ross, Katalin

AU - Sjöqvist, Elisabeth

AU - Stachelhaus-Theimer, U.

AU - Steuerwald, Ulrike

AU - Törnhage, Carl Johan

AU - Weinstein, David A.

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AB - 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.

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KW - glycogen storage diseases

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VL - 5

JO - Journal of Inborn Errors of Metabolism and Screening

JF - Journal of Inborn Errors of Metabolism and Screening

ER -

Hepatic Glycogen Storage Diseases: Toward One Global Collaborative Network

Abstract

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