Chair and Chief Executive Officer, AKU Society

Nick Sireau, PhD, is the Chair and CEO of the AKU Society, a patient group that works on the ultra rare disease Alkaptonuria (also known as AKU or Black Bone Disease). Nick joined the AKU Society in 2003 after both his sons were diagnosed with the disease. The AKU Society is at the centre of a global movement of AKU patient groups across Europe, the Middle East, Asia, North America and South America. It works closely with scientists, clinicians and industry across Europe in order to fund and develop new and better treatments for AKU. Nick is also the Co-founder and Chair of Findacure, a non-profit organisation that helps all patients with rare diseases through a programme of peer mentoring and training workshops to help them set up their own patient groups. Findacure is also involved in drug repurposing for rare diseases through partnerships with researchers around Europe. Nick is a fellow of the Ashoka global fellowship of social entrepreneurs. He is the author 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 Publications, 2016).