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A New Voice in Science. Patient participation in decision-making on biomedical research. Francisca Caron-Flinterman, Dissertation, 2005 ISBN-10:90 9019996 9; ISBN-13 978 90 9019996 2

It's My Life, a new revolution patient power. Simon Rozendaal, 2007. ISBN-13: 978-90-5911-538-5. Twelve patients with rare genetic diseases from all over the world are interviewed. Their stories show a determination to take charge, to make a real difference.




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