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Orphanet J Rare Dis. 2012 Aug 21;7:53. doi: 10.1186/1750-1172-7-53.

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

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.

PMID:
22909005
[PubMed - indexed for MEDLINE]
PMCID:
PMC3489863
Free PMC Article

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