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Open Access 01-10-2010 | Oral presentation

Contribution of rare disease patient organisations to medical education

Author: Rainald von Gizycki

Published in: Orphanet Journal of Rare Diseases | Special Issue 1/2010

Excerpt

Faced with about 7000 rare diseases, the limited knowledge of physicians is obvious, and deficits in diagnosis and therapy in consequence as well. Rare disease patients however, being usually confronted with only one disease or syndrome during their life time learn to cope with the symptoms, course and specificities of their disease and acquire expertise in diagnostics and treatments, as well as a feeling for a limited competence even of specialists. …

Title: Contribution of rare disease patient organisations to medical education
Author: Rainald von Gizycki
Publication date: 01-10-2010
Publisher: BioMed Central
Published in: Orphanet Journal of Rare Diseases / Issue Special Issue 1/2010
Electronic ISSN: 1750-1172
DOI: https://doi.org/10.1186/1750-1172-5-S1-O25

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Contribution of rare disease patient organisations to medical education

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The present situation of Rare Diseases in Central/Eastern Europe? The role of patient organisations

The German plan for rare diseases: a development in progress

DYSCERNE: a European Network of Centres of Expertise for Dysmorphology

European Project for Rare Diseases National Plans Development (EUROPLAN)

Health technology assessment: oncology drugs with orphan designation as an example

Rare diseases research in Europe: an overview based on data from the Orphanet database