Fair for Rare NZ campaign
“No country can claim to have achieved universal healthcare if it has not adequately and equitably met the needs of those with rare diseases.” Helen Clark, United Nations
On 28 February 2020 - Rare Disease Day, RDNZ and our collective of support groups launched the Fair for Rare NZ campaign, calling for the development of a National Rare Disorder Framework.
The launch took place at Parliament and was hosted by Dr Liz Craig MP.
RDNZ and its collective called on New Zealanders to acknowledge the common challenges faced by people living with a rare disorder.
As part of this campaign, the rare disorder community collectively identified seven strategic priorities to improve health and wellbeing for people living with a rare disorder:
Early and accurate diagnosis of rare diseases
Coordinated and integrated pathways for cohesive healthcare
Implement simple mechanisms to ensure appropriate access to disability and social supports
Equitable access to modern rare disorder medicines through a specific assessment pathway
Coordinated and funded programme of research for rare disorders
Capture relevant data on rare disorders in New Zealand
Planned training on rare disorders for health professionals and support staff
“No country can claim to have achieved universal healthcare if it has not adequately and equitably met the needs of those with rare diseases.” Helen Clark, United Nations
RDNZ has created resources to enable all people living with a rare disorder and their whānau to share their own story and support the Fair for Rare NZ campaign.
Here is a toolkit of resources to help supporters meet their local MP to share their stories.
This document outlines the campaign goals and has been endorsed by our collective and partners.