Fair for Rare: a word from Gill
When I was a student at Auckland University my mother was Public Relations Officer for CCS. She encouraged me to volunteer, and in time introduced the Access Parking symbol, and helped to establish the Murray Halberg and Laura Fergusson Trusts, and the first telethons. I can see her clearly, typing newsletters late at night to help to share the stories of those who were too often unheard, of their courage and determination.
Later I had the chance at Victoria in Wellington to combine student health, counselling, learning support, careers, kohanga reo, accommodation and support for Students with Disabilities, with specific services for Maori and Pacific students, and to develop Vic Volunteers - students who supported students with a range of special needs.
Since then I’ve had opportunities to work in challenging, rewarding areas, and to advocate for Human Rights, including the highest attainable standard of health for all - here, with governments around the world, and the UN. For me, coming to NZORD to work with you for a rare diseases framework, action plan and funding, feels like coming home.
“Where after all do universal human rights begin? In small places, close to home - so close and so small that they cannot be seen on any maps of the world... the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.”
(Eleanor Roosevelt 1948)
This was the basis for the Universal Declaration of Human Rights. I look forward to working with you and NZORD’s small hardworking team to make this vision reality.