by Jérôme Cheval · ANNE CARRIERE · tapa blanda · ISBN 9782843372933
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«Malades d'exception: Vivre avec une maladie orpheline» is Jérôme Cheval's reportage, published by Anne Carrière in paperback (273 pages, in French).
The author portrays people with rare diseases, such as Agathe, Laurence and Anaïs, and shows the impact of these conditions on their daily lives and families. Through testimonies and interviews, the book reflects the lack of treatments, the powerlessness of medicine and the importance of research, and calls for a more inclusive society.
The work was published in 2004 and closes with a glossary and a directory of rare disease associations, with their addresses and websites.
A work aimed at readers interested in real health testimonies and at those who want to better understand rare diseases.
