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Rare Diseases And Social Entrepreneurs: A Book

September 18, 2014

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.

Copyright © 2012-2014, Orphan Druganaut Blog. All rights reserved.

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2 Comments
  1. Thank you so much for sharing. This sounds really interesting.

    • Hi & thank you for visiting the Orphan Druganaut Blog. Are there any books/movies on orphan drugs/rare diseases that you can recommend ? Thanks, Ann

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