Rare Disorders NZ: April update

"Upon arriving at a hospital for any medical support, nearly every staff member has NO IDEA what they are dealing with."

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Kia kaha, noho ora mai

Nga mihi,

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Here is a list of the current resources on our website:

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In November 2019 RDNZ conducted a survey to highlight the barriers within the current health system for people living with rare disorders. 

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. 

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.  

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