Dr. Ruth Spearing is a highly esteemed haematologist and medical researcher. Ruth's involvement with rare disorders started in 1995 with advocacy for ceredase (which at that time was the most expensive medicine in the world) for Gaucher disease. A low dose regimen was approved by Pharmac the following year. She remained on the panel which regularly reviewed the patient's progress to ensure that for those who needed a higher dose obtained this, until 2015. More recently, she has been the medical advisor to the Hereditary Haemorrhagic Telangiectasia patient support group and has submitted clinician-initiated applications for several drugs to Pharmac for this group and for Adult Acute Lymphoblastic Leukaemia.

Dr. Ruth Spiering

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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