Hepatic Glycogen Storage Diseases Toward One Global Collaborative Network

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.

Saved in:
Bibliographic Details
Main Authors: Derks,Terry G. J., Nemeth,Antal, Adrian,Katrin, Arnell,Henrik, Roskjær,Ann Bech, Beijer,Eva, Boekhorst,Sebastiaan te, Heidenborg,Carina, Landgren,Marcus, Nilsson,Mikael, Papadopoulou,Domniki, Ross,Katalin, Sjöqvist,Elisabeth, Stachelhaus-Theimer,U, Steuerwald,Ulrike, Törnhage,Carl-Johan, Weinstein,David A.
Format: Digital revista
Language:English
Published: Latin American Society Inborn Errors and Neonatal Screening (SLEIMPN); Instituto Genética para Todos (IGPT) 2017
Online Access:http://old.scielo.br/scielo.php?script=sci_arttext&pid=S2326-45942017000100306
Tags: Add Tag
No Tags, Be the first to tag this record!
id oai:scielo:S2326-45942017000100306
record_format ojs
spelling oai:scielo:S2326-459420170001003062019-05-14Hepatic Glycogen Storage Diseases Toward One Global Collaborative NetworkDerks,Terry G. J.Nemeth,AntalAdrian,KatrinArnell,HenrikRoskjær,Ann BechBeijer,EvaBoekhorst,Sebastiaan teHeidenborg,CarinaLandgren,MarcusNilsson,MikaelPapadopoulou,DomnikiRoss,KatalinSjöqvist,ElisabethStachelhaus-Theimer,USteuerwald,UlrikeTörnhage,Carl-JohanWeinstein,David A. glycogen storage diseases ketone bodies fasting dietary management 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.info:eu-repo/semantics/openAccessLatin American Society Inborn Errors and Neonatal Screening (SLEIMPN); Instituto Genética para Todos (IGPT)Journal of Inborn Errors of Metabolism and Screening v.5 20172017-01-01info:eu-repo/semantics/articletext/htmlhttp://old.scielo.br/scielo.php?script=sci_arttext&pid=S2326-45942017000100306en10.1177/2326409817733009
institution SCIELO
collection OJS
country Brasil
countrycode BR
component Revista
access En linea
databasecode rev-scielo-br
tag revista
region America del Sur
libraryname SciELO
language English
format Digital
author Derks,Terry G. J.
Nemeth,Antal
Adrian,Katrin
Arnell,Henrik
Roskjær,Ann Bech
Beijer,Eva
Boekhorst,Sebastiaan te
Heidenborg,Carina
Landgren,Marcus
Nilsson,Mikael
Papadopoulou,Domniki
Ross,Katalin
Sjöqvist,Elisabeth
Stachelhaus-Theimer,U
Steuerwald,Ulrike
Törnhage,Carl-Johan
Weinstein,David A.
spellingShingle Derks,Terry G. J.
Nemeth,Antal
Adrian,Katrin
Arnell,Henrik
Roskjær,Ann Bech
Beijer,Eva
Boekhorst,Sebastiaan te
Heidenborg,Carina
Landgren,Marcus
Nilsson,Mikael
Papadopoulou,Domniki
Ross,Katalin
Sjöqvist,Elisabeth
Stachelhaus-Theimer,U
Steuerwald,Ulrike
Törnhage,Carl-Johan
Weinstein,David A.
Hepatic Glycogen Storage Diseases Toward One Global Collaborative Network
author_facet Derks,Terry G. J.
Nemeth,Antal
Adrian,Katrin
Arnell,Henrik
Roskjær,Ann Bech
Beijer,Eva
Boekhorst,Sebastiaan te
Heidenborg,Carina
Landgren,Marcus
Nilsson,Mikael
Papadopoulou,Domniki
Ross,Katalin
Sjöqvist,Elisabeth
Stachelhaus-Theimer,U
Steuerwald,Ulrike
Törnhage,Carl-Johan
Weinstein,David A.
author_sort Derks,Terry G. J.
title Hepatic Glycogen Storage Diseases Toward One Global Collaborative Network
title_short Hepatic Glycogen Storage Diseases Toward One Global Collaborative Network
title_full Hepatic Glycogen Storage Diseases Toward One Global Collaborative Network
title_fullStr Hepatic Glycogen Storage Diseases Toward One Global Collaborative Network
title_full_unstemmed Hepatic Glycogen Storage Diseases Toward One Global Collaborative Network
title_sort hepatic glycogen storage diseases toward one global collaborative network
description 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.
publisher Latin American Society Inborn Errors and Neonatal Screening (SLEIMPN); Instituto Genética para Todos (IGPT)
publishDate 2017
url http://old.scielo.br/scielo.php?script=sci_arttext&pid=S2326-45942017000100306
work_keys_str_mv AT derksterrygj hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT nemethantal hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT adriankatrin hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT arnellhenrik hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT roskjærannbech hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT beijereva hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT boekhorstsebastiaante hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT heidenborgcarina hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT landgrenmarcus hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT nilssonmikael hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT papadopouloudomniki hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT rosskatalin hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT sjoqvistelisabeth hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT stachelhaustheimeru hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT steuerwaldulrike hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT tornhagecarljohan hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
AT weinsteindavida hepaticglycogenstoragediseasestowardoneglobalcollaborativenetwork
_version_ 1756441181716217856