Returning to the fray – June 2016

In fact I never left it. It’s 12 months since I moved on from my role with the NZ Organisation for Rare Disorders, which I established in 1999. But rather than retire, I have stayed actively involved in rare disease advocacy and research issues, almost without a break.

Currently I hold 6 board/committee roles relating to rare disease advocacy and research. Details are here on my LinkedIn Profile. Most of my current work has an international focus, though my role as Chair of Lysosomal Diseases New Zealand ( and my ongoing interest in rare disease policy in New Zealand, keep my eyes firmly on policy matters here as well.

I’ll publish occasional news items and updates to share my work and progress.