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Hepatic Glycogen Storage Diseases Toward One Global Collaborative Network
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..
Afiliación
  • Derks, Terry G. J.; University of Groningen. University Medical Center Groningen. Beatrix Children's Hospital. Groningen. NL
  • Nemeth, Antal; Karolinska University Hospital. Department of Pediatric Gastroenterology, Hepatology and Nutrition. SE
  • Adrian, Katrin; The Queen Silvia Children's Hospital. Department of Pediatrics. Gothenburg. SE
  • Arnell, Henrik; Karolinska University Hospital. Department of Pediatric Gastroenterology, Hepatology and Nutrition. SE
  • Roskjær, Ann Bech; Copenhagen University Hospital. Juliane Marie Centre. Department of Pediatrics. DK
  • Beijer, Eva; Karolinska University Hospital. Department of Pediatric Gastroenterology, Hepatology and Nutrition. SE
  • Boekhorst, Sebastiaan te; PatientConnect. Bilthoven. NL
  • Heidenborg, Carina; Karolinska University Hospital. Department of Pediatric Gastroenterology, Hepatology and Nutrition. SE
  • Landgren, Marcus; Scandinavian Association for Glycogen Storage Disease. Limhamn. SE
  • Nilsson, Mikael; Skåne University Hospital. Department of Pediatrics. Lund. SE
  • Papadopoulou, Domniki; Skåne University Hospital. Department of Pediatrics. Lund. SE
  • Ross, Katalin; University of Florida College of Medicine. Glycogen Storage Disease Program. Gainesville. US
  • Sjöqvist, Elisabeth; Skåne University Hospital. Department of Pediatrics. Lund. SE
  • Stachelhaus-Theimer, U; Selbsthilfegruppe Glykogenose Deutschland e.V.. Marl. DE
  • Steuerwald, Ulrike; National Hospital of the Faroe Islands. Tórshavn. FO
  • Törnhage, Carl-Johan; University of Gothenburg. Sahlgrenska Academy. Gothenburg. SE
  • Weinstein, David A.; University of Florida College of Medicine. Glycogen Storage Disease Program. Gainesville. US
Article en En | LILACS-Express | LILACS | ID: biblio-1090948
Biblioteca responsable: BR1.1
ABSTRACT
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.
Palabras clave

Texto completo: 1 Colección: 01-internacional Banco de datos: LILACS Idioma: En Revista: J. inborn errors metab. screen Asunto de la revista: Medicina Cl¡nica / Patologia Año: 2017 Tipo del documento: Article País de afiliación: Dinamarca / Islas Feroe / Alemania / Países Bajos / Suecia / Estados Unidos

Texto completo: 1 Colección: 01-internacional Banco de datos: LILACS Idioma: En Revista: J. inborn errors metab. screen Asunto de la revista: Medicina Cl¡nica / Patologia Año: 2017 Tipo del documento: Article País de afiliación: Dinamarca / Islas Feroe / Alemania / Países Bajos / Suecia / Estados Unidos