Rare Diseases And Social Entrepreneurs: A Book
This is the second Blog Post in a series that presents and reviews books in the rare disease and orphan drug space.
The book, “Rare Diseases: Challenges and Opportunities for Social Entrepreneurs”, is published in 2013 by Greenleaf Publishing. The book looks at the orphan drug development process for rare diseases from both a patient and business perspective. The book is edited by Dr. Nicolas Sireau, Chairman of the AKU (Alkaptonuria) Society. Dr. Sireau, who has two sons with AKU, steps down from a job as a CEO to volunteer for the AKU Society. The mission of the AKU Society is to focus on finding a cure for AKU. The book is available for purchase directly from the publisher.
The book aims to help other:
“ … social and business entrepreneurs … in their mission to treat rare disease patients better and faster. Not only does it include Nick’s experiences, but developments from a further 24 key players in the rare disease movement.”
The AKU Society is a medical charity dedicated to finding a cure for AKU and provides support for patients with AKU. AKU is a rare disease caused by the lack of an enzyme called homogentisic dioxygenase. Patients cannot fully break down a black pigment call homogentisic acid (HGA) which results in large amounts building up in body tissues. This can lead to debilitating health problems. AKU is caused by a genetic mutation, a recessive disorder, where the AKU gene is passed on by both of the patient’s parents. There is currently no cure or treatment for AKU.
Book Cover courtesy of Greenleaf Publishing.
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