Source: New Zealand Governor General

E nga mana, e nga reo, e nga iwi o te motu e huihui nei, tēnei aku mihi nui ki a koutou. Kia ora tātou katoa.

I specifically acknowledge

• John Forman, founder of Rare Disorders New Zealand
• James McGoram, Board Chair; and
• Chris Higgins, Chief Executive of Rare Disorders New Zealand

My warmest welcome to members of the Rare Disorders community, to whānau, and to carers and supporters.

I am very pleased to be Patron of Rare Disorders New Zealand, and to support your work by joining you in celebrating your 25^th anniversary with this afternoon’s reception and awards ceremony.

It’s a truism worth repeating that we judge a society by the way it cares for its most vulnerable people. Twenty-five years ago, Rare Disorders New Zealand took up the challenge of representing people who understand what it is to feel alone and isolated, and appreciate the huge difference the right diagnosis and treatment can make to their lives. By helping them and representing their interests, you have helped Aotearoa New Zealand to be a better place.

The concept of an ‘umbrella organisation’ evokes manaakitanga, support and shelter from the elements.

I like to think you will also relate to this whakataukī: ‘Ki te kotahi te kakaho, ka whati; ki te kapuia, e kore e whati’ – which translates as ‘a reed that stands alone can be broken, but it will not be broken if it stands alongside others’.

Rare Disorders New Zealand has enabled people to experience strength and support by standing together in whanaungatanga.

You have been tireless advocates for a more coordinated approach to diagnosis and treatment, and your mahi bore fruit with the launch, last year, of New Zealand’s first national strategy for rare disorders.

The Aotearoa New Zealand Rare Disorders Strategy is a significant milestone, responding as it does to the lived experiences and needs of your community, as revealed through your own surveys.

I appreciate the impact of the Strategy has yet to be felt – and you will be eager to see meaningful progress – whether that be with earlier diagnosis, clearer pathways for clinical care, better access to support and medicines, appropriate training for the health workforce, or the gathering of research data.

With my own background in health and academia, I am delighted to see the establishment of the Rare Disorders Research Network,  based in Victoria University. The Network will enable New Zealand researchers to experience the support of colleagues working in similar fields, and encourage coordinated research programmes.

Their findings will have real-life implications for your community, and contribute to global understanding of rare disorders and their treatment.

I appreciate that as a charitable organisation, Rare Disorders New Zealand is reliant on the tireless dedication of a small number of staff and a large number of volunteers. I welcome this opportunity to thank you all for devoting your time, energy and expertise to such a worthy cause.

Today we are also formally acknowledging award recipients for their steadfast commitment to the rare disorders community, and thanking them, on behalf of all New Zealanders, for what they have achieved.

Once again, I welcome you all to Government House. Please allow me to extend to you all the aroha and manaakitanga you so often extend to others, and are so deserving of receiving yourselves.

Kia ora, kia kaha, huihui tātou katoa

MIL OSI