NZ Voice of Rare Disorders White Paper

5 Mar 2020

None

The NZ Voice of Rare Disorders survey had almost 300 respondents, making it the largest survey of the rare disorder community ever in New Zealand. Patients, whanau and carers shared stories of the challenges they face to access healthcare, as well as the impact of living with a rare disorder on education, employment and other areas of life. 

None

Some of the clear barriers to access to vital services and supports are demonstrated below:

The results provide a benchmark for future research as well as comparisons with the experience of people living with a rare disorder in other countries.  

None

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.

Learn more