Volume 5 Supplement 1

5th European Conference on Rare Diseases (ECRD 2010)

Open Access

Medical education: the role of patients

Orphanet Journal of Rare Diseases20105(Suppl 1):O26

DOI: 10.1186/1750-1172-5-S1-O26

Published: 19 October 2010

Health care professionals cannot be taught or know about 6 000 to 8 000 rare diseases. Though research, care and treatments progress every year, rare diseases are chronic, severe, complex and disabling conditions affecting patients and their families 24 hours a day. The national plans in France organise a 2 hours course for medical students to raise awareness and provide tools. 2 mothers of children living with rare diseases participated in a 20 hour pilot course in a medical school in Paris. During this course, they present the outcomes of the EurordisCare studies (12 000 questionnaires to patients and families throughout Europe), discuss their daily experiences with students and present the complexity of a very necessary comprehensive approach for rare diseases: medical, educative, social, from childhood to adulthood, extended to parents and siblings.

Authors’ Affiliations

(1)
Eurordis, Plateforme Maladies Rares

Copyright

© Nourissier; licensee BioMed Central Ltd. 2010

This article is published under license to BioMed Central Ltd.

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