Rare Disorders New Zealand morning tea

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:

Michelle Arrowsmith, Chief Executive of Rare Disorders New Zealand
James McGoram, Chair of the Board
and Misty Kimura and her family

Health and wellbeing are a natural focus for my term as Governor-General, following my previous career in health, research and education. In addition, my husband Richard is a doctor.

I welcome any opportunity to raise awareness about particular health issues and to support organisations doing vital work on the ground – including the many support groups who are under the umbrella of Rare Disorders New Zealand.

It is fitting that we mark International Rare Disease Day and New Zealand’s first Rare Disease Month by launching your new guide for families.

In te ao Māori, there are four key elements for health and wellbeing: wairua – our spirit; hinengaro – our psyche; tinana – our physique; and whanau.

I am pleased to see that holistic approach in this publication, in its emphasis on relationships, psychological resilience, and communication – in addition to medical advice.

We have some way to go in Aotearoa in terms of awareness of rare disorders, and to addressing the existing barriers to care, diagnosis and treatment.

Receiving a diagnosis for a rare disorder must be an overwhelming and frightening experience, particularly if few other people in Aotearoa know about it or know what it is like to live with that particular condition.

Having worked in health advocacy myself, I know the strength to be found in numbers. Joining forces has enabled you to pool your energies, information and resources – and to help people with the guidance they need.

It must be very satisfying to produce a publication that will help people navigate a pathway forward. Congratulations to everyone who has played a part, and I particularly thank the children and families who shared their insights and allowed themselves to be photographed.

When other families read your accounts, they will take great comfort from knowing they are not alone. When they see how you adjusted to your new reality, they will know that they can too.

I wish everyone here today – staff, supporters, and families – all the very best with your initiatives to mark Rare Disease Month – and your ongoing mission to raise awareness of rare disorders in our communities.