AKU Blog

The Essential Rare Disease Tool-kit for Entrepreneurs

Wednesday, April 03, 2013
When his two boys were diagnosed with alkaptonuria (AKU), Nick Sireau, our Chairman, stepped down from his

paid job as founding CEO of SolarAid to volunteer for the AKU Society.
Even though AKU was discovered more than 100 years ago, there is still no cure or approved treatment. That is why Nick left a job at one of the fastest growing international NGOs in the UK, to instead focus on finding a cure for AKU.

He began building a global rare disease patient movement, determined to find a cure for his two boys and others just like them. He has helped build an international network of scientists, doctors and patients. We now have 8 sister societies across the world.
Nick helped spearhead the quest for a cure, using both his experience in business and as a father of two AKU patients. Thanks to this, we are now involved in a clinical trial of the first ever potential treatment for AKU.
He has now edited and released a book: “Rare Diseases: Challenges and Opportunities for Social Entrepreneurs”, aiming to help other social and business entrepreneurs just like him 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 Business Perspective

“Rare Diseases: Challenges and Opportunities for Social Entrepeneurs” explores the rare disease sector from a business angle, as well as a patient one. It includes chapters exploring the drug development process for rare diseases, and case studies of successful orphan drug enterprises.

The Patient Perspective

Many of the chapters within the book discuss the growing rare disease patient movement, including a case study of a successful patient group which uses social enterprise techniques. It also provides key requirements for helping patients through registries and centres of excellence.
“Rare Diseases: The Challenges and Opportunities for Social Entrepreneurs” is an essential tool-kit for social and business entrepreneurs interested in the world of orphan diseases. Everything a social entrepreneur needs to know about the rare disease sector can be found in this book.
Part of the sales of the book will go to the AKU Society, as well as the other rare disease patient group who contributed.
Don’t miss out. Pre order the book today and spread the word with your friends and colleagues!