Bobi-Rose Leatherby

Bobi-Rose Leatherby (Taranaki tuturu, Te Ātiawa) is a soon-to-be social worker (completing a Master of Applied Social Work), researcher, and advocate with extensive lived experience navigating health, disability, and support systems alongside whānau affected by rare and life-limiting conditions. Over 14 years as a primary caregiver, she developed a deep understanding of the realities families face and the substantial experiential expertise they often hold, which formal health and disability systems do not always recognise.

Bobi-Rose has contributed as a Tangata Whenua representative for the Aotearoa New Zealand Association of Social Workers, a community Tangata Whenua representative within clinical research, and a student researcher within a kaupapa Māori health research project. She is passionate about improving care and health outcomes for underserved communities and advocates locally and nationally for rare disorder communities. Her particular interests include palliative care, Māori wellbeing, and developing pathways that ensure whānau experiencing terminal rare disorders have access to end-of-life care grounded in rangatiratanga, dignity, and self-determination.