Nick Sireau is a social entrepreneur and the father of two boys with AKU, a rare genetic disease also known as Black Bone Disease. He is chair and CEO of the AKU Society, an award-winning global patient group that seeks cures for AKU and helps patients with the disease. The AKU Society is at the centre of a major international initiative to develop a promising treatment for AKU.
Nick is also chair and co-founder of Findacure, a charity that helps patients with rare diseases and develops new drugs to treat them, and chair and founder of the OCD Research Partnership, which promotes research into new treatments for obsessive-compulsive disorder. He is the editor of Rare Diseases: Challenges and Opportunities for Social Entrepreneurs (Greenleaf 2013) and The Patient Group Handbook: A Practical Guide for Research and Drug Development (Findacure 2016). He frequently talks at events and on radio and television about AKU and other rare diseases.