Member – Māori Advisory Group
“E koekoe te tūī, e ketekete te kākā, e kūkū te kererū.”
Every bird sings its own song — a reminder that each person has their own voice, gifts, and way of contributing to the world. This whakataukī celebrates the diversity and uniqueness of our whānau Māori living with rare disorders across Aotearoa.
Rare Disorders New Zealand (RDNZ) is the national organisation representing the collective voice of people and whānau affected by rare conditions. We advocate for equitable access to health, disability, and social services, and work to raise awareness, influence policy, and empower those whose conditions are often unseen or unheard.
RDNZ is establishing a Māori Advisory Group (MAG) to ensure that our mahi is grounded in Te Tiriti o Waitangi and guided by kaupapa Māori values. The MAG will provide strategic and cultural advice to RDNZ’s Board and leadership, helping to strengthen how we advocate for and support Māori affected by rare disorders.
Te Ara Tūhono: Te Tiriti o Waitangi - Guiding Framework: Te Tiriti o Waitangi
The Committee's work will be underpinned by the recognition of Te Tiriti o Waitangi as a foundational document for Aotearoa New Zealand, with particular reference to the understanding of its Articles from a Māori perspective:
Te Kupu Whakataki (The Preamble): RDNZ acknowledges the aspirations for peace, good order, and the protection of Māori rights and taonga.
Wāhanga Tuatahi (Article One): Kawanatanga (Governance) RDNZ recognises the right of the Crown to govern, while understanding that for Māori, this meant a sharing of authority rather than a complete cession of sovereignty. The Committee will advise on how RDNZ can best navigate its role within the governing structures while supporting Māori self-determination.
Wāhanga Tuarua (Article Two): Tino Rangatiratanga (Absolute Authority/Chieftainship) RDNZ acknowledges and commits to the unqualified exercise of Māori tino rangatiratanga over their lands, resources (taonga), and cultural practices. The Committee will guide RDNZ in actively protecting and promoting Māori control over their health, cultural identity, and wellbeing in the context of rare disorders, including their collective and individual possessions and values. This includes the right for Māorito determine how their taonga (which encompasses intangible aspects like language, knowledge, and health systems) are managed and developed.
Wāhanga Tuatoru (Article Three): Ōritetanga (Equity/Equality) RDNZ acknowledges the commitment to Māori receiving the same rights and duties of citizenship as all people of New Zealand. The Committee will advise on ensuring equitable access, outcomes, and opportunities for Māori affected by rare disorders, addressing systemic barriers to achieve true equity.
Through this mahi, the MAG will help shape RDNZ’s policies, partnerships, and research approaches — ensuring they reflect the aspirations of Māori and contribute to a future where Māori experience equity within the rare disorders space and Pae Ora for all whānau.
We’re seeking passionate Māori with lived experience, community connections, or professional expertise in health, research, or advocacy to join this kaupapa.
Members will meet quarterly (online and in-person around Matariki).
Expressions of Interest close: 12 March February 2026
To learn more or apply, contact chris@raredisorders.org.nz
