Nicolas Sireau
Dr Nicolas Sireau is Chairman and CEO of the AKU Society, a medical charity that works to find a cure for and support patients with AKU, which affects his two sons. AKU (short for Alkaptonuria) is a monogenic disease caused by a missing enzyme, leading to the accumulation of a substance called homogentisic acid at 2,000 times the normal rate. This acid binds to cartilage and bone, turning them black – hence it is also called Black Bone Disease.
The AKU Society is a fast growing international patient movement. We work with AKU research teams, clinical centres, biotech and pharma partners across the world. We launched in November 2012 a major five-year programme of international clinical trials for a promising new treatment called Nitisinone as part of an EC-funded consortium. The website of the AKU Society is www.akusociety.org.Dr Sireau is on the Management Committee of Rare Disease UK, the national alliance for people with rare diseases. He is the editor of the book ‘Rare Diseases: Challenges and Opportunities for Social Entrepreuneurs’ (Greenleaf, 2013). He is also the Founder and Chairman of Findacure (www.findacure.org.uk), a foundation that seeks to change conventional thinking about rare diseases by funding scientific research into fundamental diseases: rare diseases that are gateways to understanding common diseases.