I have spent a good deal of my adult life pursuing causes of social justice, equity in healthcare, and disability rights and inclusion, with my working life since the early 1990s being entirely in these fields. Since the late 1990s I shifted focus to the health needs and social support for those affected by rare diseases, setting up the NZ Organisation for Rare Disorders in 1999, getting it formally registered in 2001 and leading the organisation until stepping down in June 2015.
Currently I hold volunteer roles on two boards of international rare disease organisations, working to establish rare disease policy and action plans in all countries through influence on governments and in the UN, WHO, World Bank and similar international agencies.
In parallel with this international policy work, I have a leadership role with Lysosomal Diseases New Zealand, to improve diagnosis, clinical care and social support for patients in NZ, and with ISMRD, an international not-for-profit focused on similar concerns for patients with Glycoprotein storage diseases. Details of my roles can be found on my LinkedIn profile.
Perhaps you’d like some advice, or maybe you’d like to help the cause?