Rare Disorders Strategy Released Today

We
are pleased to announce the release of Aotearoa New
Zealand’s first Rare Disorders Strategy, developed by
Manatū Hauora | Ministry of Health, with input and advice
from Rare Disorders NZ as part of the Reference Group
representing the collective voice of rare in
Aotearoa.

The Strategy marks the culmination of over
20 years of advocacy from Rare Disorders NZ and other
patient advocates calling for official recognition of the
inequities faced by people living with a rare disorder and
the need for strategic direction to ensure improved health
and well-being for this vulnerable population
group.

While the Strategy does not include everything
we were hoping, it is an important first step to seeing
meaningful change in our health system and other services
for the rare community.

This is a significant
milestone for people living with a rare disorder in Aotearoa
and a moment to celebrate and reflect on what we have
achieved as a collective.

Thank you to everyone who
has been involved in the consultation process, provided
input and given feedback.

We look forward to the next
steps of ensuring the Strategy is implemented to deliver
meaningful change for people living with a rare
disorder.

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