Professor Gareth Baynam is the Medical Director of the Rare Care Centre and its state-wide clinical service based as the Perth Children’s Hospital; Head of the Western Australian Register of Developmental Anomalies (birth defects and cerebral palsy registers); Clinical Geneticist and Program Director of the Undiagnosed Diseases Program WA; Foundation Board Member of the Undiagnosed Diseases Network International; and Adjunct Genomics Policy Officer in the Western Australian Health Department. He is affiliated with the University of Western Australia; Curtin University; Murdoch University; Notre Dame University; Melbourne University; and Telethon Kids Institute. He is the Founder of an integrated suite of cross-sector and community engaging initiatives to improve the lives of people living with rare diseases including Project Y, Cliniface (3D facial analysis for rare diseases diagnosis, clinical trials and device design) and Lyfe Languages (Universal Indigenous Medical Translator). He has partnered with the Aboriginal health care leaders and communities in WA over more than a decade to implement a range of state-wide initiatives to improve the equity for Indigenous people living with rare diseases. He Chairs and/or is one of the Executive or Advisories of multiple international rare diseases initiatives; and multiple National Institutes of Health in Europe, North America and Asia. He has personal connections to rare diseases.

Prof Gareth Baynam

Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

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