Our vision for a Rare Support Centre Aotearoa
Following consultation with domestic and international stakeholders within the rare disorder sector, Rare Disorders NZ has developed a proposal for a Rare and Undiagnosed Disorders Centre of Expertise in the health system, which we believe will make a signficant difference to the health and wellbeing of people living with a rare disorder.
The Centre will identify gaps in the delivery of service and support in New Zealand’s health and other systems for people living with rare disorders, similar to other initiatives globally.
The Centre will comprise a multidisciplinary team of internationally-networked experts within New Zealand, who will be available to provide expertise and guidance for clinicians and professionals in how to support rare patients and clients in accordance with best practice standards. This work will be an extension of roles they hold with locality-based health and other service providers.
You can read our proposal for a Rare Support Centre Aotearoa (Rare and Undiagnosed Disorders Centre of Expertise) here.