There’s a new movement that is sweeping the globe: it’s called social enterprise. Bringing together the best of the non-profit world with the best of the business world, it seeks new answers to old and new problems. OxfordJam is the fringe event that happens every year in Oxford at the same time as the Skoll Forum for Social Entrepreneurship.
I’ll be running a lunch event on Rare Diseases and Social Enterprise on Wednesday 30 March. It’s free to attend, although it’s great if you can provide a donation towards the organisers’ costs. We’ll be unpacking how to drive forward the quest for cures for rare diseases using techniques from the world of social enterprise. A must event for all patient groups out there!
Session: Rare Diseases and Social Enterprise
Host: Dr Nick Sireau (AKU Society) Wednesday 30 March 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.
To book a place, go to: http://www.oxfordjam.org.uk/2011/rare-diseases-and-social-enterprise
This is me
There are 7,000 rare diseases. AKU is just one of them, although it has a place in the history books for being the first metabolic disease ever identified, in 1901. This blog provides advice, tips and suggestions for the wider rare disease movement based on our experience on AKU. Please read on and don't hesitate to comment.