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Open Access 01-12-2012 | Letter to the Editor

Guiametabolica.org: empowerment through internet tools in inherited metabolic diseases

Authors: Manuel Armayones, M Antònia Vilaseca, Júlia Cutillas, Jordi Fàbrega, Jorge Juan Fernández, Mei García, Natàlia Egea, Modesta Pousada, Beni Gómez-Zuñiga, Jaume Pérez-Payarols, Rafael Artuch, Francesc Palau, Mercedes Serrano

Published in: Orphanet Journal of Rare Diseases | Issue 1/2012

Abstract

Web-based interventions are effective on the patient empowerment. Guiametabolica.org constitutes an interface for people involved in inherited metabolic diseases, trying to facilitate access to information and contact with professionals and other patients, offering a platform to develop support groups. Guiametabolica.org is widely considered for Spanish-speaking patients and caregivers with inherited metabolic diseases. Preliminary evaluations show changes in their habits, decrease in their senses of isolation and improvement regarding self-efficacy. Specific inherited metabolic diseases websites, especially participative websites, should be considered as a complement to more traditional clinical approaches. Their contribution lies in patient’s general well-being, without interfering with traditional care.

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Title: Guiametabolica.org: empowerment through internet tools in inherited metabolic diseases
Authors: Manuel Armayones
M Antònia Vilaseca
Júlia Cutillas
Jordi Fàbrega
Jorge Juan Fernández
Mei García
Natàlia Egea
Modesta Pousada
Beni Gómez-Zuñiga
Jaume Pérez-Payarols
Rafael Artuch
Francesc Palau
Mercedes Serrano
Publication date: 01-12-2012
Publisher: BioMed Central
Published in: Orphanet Journal of Rare Diseases / Issue 1/2012
Electronic ISSN: 1750-1172
DOI: https://doi.org/10.1186/1750-1172-7-53

At a glance: The STEP trials

Springer Medicine

Guiametabolica.org: empowerment through internet tools in inherited metabolic diseases

Abstract

At a glance: The STEP trials

Springer Medicine

Abstract

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