Developing a treatment for Black Bone Disease/Alkaptonuria (AKU): the story of the AKU Society | Webinar Recording

Learning objectives:  

• Background to Black Bone Disease.
• How the AKU Society as a patient group led the development of a treatment for this ultra-rare genetic disease.
• What this means for AKU patients and how Vitaflo products are helping with the treatment.

Dr Nick Sireau is the CEO and Chair of Trustees at the AKU Society, a patient group that helps people with AKU (short for alkaptonuria), a rare genetic disease affecting both his children. He is also co-founder and Chair of Findacure, an organisation that helps rare disease patient groups, and co-founder and Chair of Orchard OCD, a charity that develops new treatments for obsessive-compulsive disorder (OCD).

Previously, Nick was the CEO of SolarAid, an NGO working in Africa. He is a fellow of the Ashoka Fellowship of Social Entrepreneurs and has a PhD in the social psychology of social movements.

He is the editor of ‘Rare Diseases: Challenges and Opportunities for Social Entrepreneurs’ (Greenleaf 2013) and of the 'Patient Group Handbook: A Practical Guide for Research and Drug Development' (Findacure 2016).