Trustee
Position Description
Rare Disorders New Zealand (RDNZ) is a respected well run charity which exists to bring about best possible health and wellbeing for people and whānau living with rare disorders in New Zealand/Aotearoa. There are about 300,000 new Zealanders with a rare disorder, and some 7000 different rare disorders prevalent in our population. They compromise a vulnerable population group at risk of being marginalised from health, education, disability and other support systems.
RDNZ's mission is to enable and empower people with rare disorders to best benefit from services and therapies available in New Zealand, and to champion their collective voice, advocating for provision of world leading evidence based health, disability, education and other services. Our successful advocacy over the last three years has resulted in New Zealand's first ever Rare Disorders Strategy, and solid Ministerial commitment to its implementation. Our work programme, designed to bring about real changes in outcomes for people and whānau living with rare disorders is set out in our strategic and annual plans, set out in the RDNZ website here.
Good governance is critical to RDNZ's success and we're looking for Trustees who will:
- Contribute to RDNZ’s effective governance through preparing for and participating in quarterly Board meetings.
- Speak up for the needs of people and whānau living with rare disorders in Aotearoa New Zealand at the forefront of their mahi.
- Support RDNZ to advocate for and actively promote the rare disorders community.
- Leverage personal connections and networks to support RDNZ’s advocacy, income generation and other activities.
- Take responsibility for ongoing development in the role; undertaking appropriate professional development, including a focus on te Tiriti o Waitangi and good governance.
- Participate in support group hui and other events where possible.
As required assist with:
- recruitment to key positions such as the CE and new Board Trustees;
- participate in CE and or Trustees disciplinary action;
- engage in key strategic policy formulation for the organisation;
- engage in the development of Board governance and risk management policies;
- adhere to RDNZ’s Trustee code of conduct.
Appointment is for a term of three years, after which the Trustee may be re-appointed for further three year terms (with the Board’s agreement), or may step down.
Ideal Applicant
The RDNZ Board is wishing to appoint two additional trustees. One will have financial and accounting expertise and will assist the Board in its stewardship of its financial resources, including management of financial risk. The other will be tangata whenua and offer kaupapa Māori expertise as the Board continues on its Tiriti partner journey.
Prospective Trustees who meet the above criteria must also have, or have the clear potential to acquire, good governance experience and expertise, and be able to demonstrate one or more of the following attributes:
- Personal connections with rare disorders, including living with a rare disorder, supporting someone with a rare disorder, and/or being a specialist in the field.
- Ability to contribute to the Board’s aim of having Trustees who collectively reflect a cross-section of the community, ensuring tangata whenua, age, ethnicity, geographic, and gender diversity are appropriately represented.
- Subject matter expertise in an area which supports the Board’s effective governance, such as financial, legal etc.
- Well-developed personal connections and networks to support RDNZ’s income generation imperatives.
- Mentorship of young people and existing or future Trustees.
We particularly encourage applications from Tāngata Whenua, Pasifika, Younger members of the community, Individuals with a disability.
Information required for you to apply
Please express your interest by attaching a CV and covering letter addressed to: RDNZ Board Chair Ariane Tuapola, chair@raredisorders.org.nz, outlining why you're interested in the role and the skills and expertise you'd bring to the Board.
