Rare Diseases and Social Enterprise

Dr Nick Sireau (AKU Society) Wednesday Lunch 13.00 – 14.15

Rare diseases affect 6-8% of the world population, yet are severely under-researched, undertreated and under-resourced. That’s why they’re called orphan diseases: orphaned from society. There are 7,000 rare diseases. Only 200 have treatments, most of which are only accessible in the Western world, leaving hundreds of millions of rare disease patients in developing countries with little hope.

Thanks to work by patient groups and certain sectors of industry, the rare disease movement is growing fast, with promising new opportunities for social entrepreneurs. Indeed, patient groups such as the European Organisation for Rare Diseases (EURORDIS), the Genetic Alliances and the US National Organisation for Rare Disorders (NORD) have radically changed the policy, research and commercial landscape by lobbying for orphan drug legislation and changing the incentives for pharma companies to invest in rare disease R&D.

Join this lunch session to discuss solutions to this hidden epidemic of rare diseases and how new models of social entrepreneurship are rapidly changing the landscape. Leading the session is Dr Nicolas Sireau, Chairman of the AKU Society and Ashoka Fellow, whose two sons have AKU (short for Alkaptonuria, also known as Black Bone Disease: www.alkaptonuria.info), the first genetic disease ever discovered.

For information and registration please visit the Lunch Session Site