Hepatic Glycogen Storage Diseases Toward One Global Collaborative Network
J. inborn errors metab. screen
;
5: e170002, 2017.
Article
in English
|
LILACS-Express
| LILACS
| ID: biblio-1090948
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.
Full text:
Available
Index:
LILACS (Americas)
Language:
English
Journal:
J. inborn errors metab. screen
Journal subject:
Medicina Cl¡nica
/
Patologia
Year:
2017
Type:
Article
Affiliation country:
Denmark
/
Faroe Islands
/
Germany
/
Netherlands
/
Sweden
/
United States
Institution/Affiliation country:
Copenhagen University Hospital/DK
/
Karolinska University Hospital/SE
/
National Hospital of the Faroe Islands/FO
/
PatientConnect/NL
/
Scandinavian Association for Glycogen Storage Disease/SE
/
Selbsthilfegruppe Glykogenose Deutschland e.V./DE
/
Skåne University Hospital/SE
/
The Queen Silvia Children's Hospital/SE
/
University of Florida College of Medicine/US
/
University of Gothenburg/SE
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