Rare Diseases Day Awards
Rau rangatira ma e huihui nei, tēnei aku mihi māhana ki a koutou.
Kia ora tātou katoa.
Nau mai haere mai ki te Whare Kawana.
Good afternoon everyone. Welcome to Government House. It’s lovely to have you here.
David and I are very pleased to join other New Zealanders, across the country, in hosting an afternoon tea in support of Rare Disease Day.
The inauguration of these awards for rare disease champions has given me an ideal opportunity to acknowledge the significance of the NZ Organisation for Rare Disorders.
I was surprised to learn that over 377,000 - around 8% - of New Zealanders have a rare disorder, and that there are over 7000 different rare disorders. That’s an astounding number and I imagine that representing people with such a wide range of diseases and disabilities must be extremely complex and challenging.
For some people, I understand that just getting a diagnosis for their particular disorder can be a monumental mission, let alone adjusting to the prognosis and treatment regimes that may follow.
Having an organisation such as yours that can direct them to an appropriate support group, and is working with health professionals and the government on their behalf, must be a great help. It is impressive to see the coverage for rare disorders that you achieved in the NZ Herald today.
I also congratulate you for introducing an awards programme to acknowledge and thank some hitherto unsung heroes of rare disease research and treatment.
Awards serve an important purpose in acknowledging valuable contributions and drawing attention to the significant work that is being done to identify causes and hopefully cures for rare disorders.
I hope that today’s recipients will concur with Sir Paul Callaghan who, reflecting on his life’s work said “What greater sense of fulfilment can there be but to make a difference to the community in which you live?”
You are all wonderful living examples of Sir Paul’s vision.