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.

Priorities for improving the health and wellbeing for 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:

  1. DIAGNOSIS

Early and accurate diagnosis of rare diseases 

  1. PLANNED PATHWAYS FOR CLINICAL CARE

Coordinated and integrated pathways for cohesive healthcare

  1. ACCESS TO DISABILITY AND SOCIAL SUPPORTS

Implement simple mechanisms to ensure appropriate access to disability and social supports

  1. RARE DISORDER MEDICINES

Equitable access to modern rare disorder medicines through a specific assessment pathway

  1. RESEARCH

Coordinated and funded programme of research for rare disorders

  1. NATIONAL RARE DISEASE REGISTRY

Capture relevant data on rare disorders in New Zealand 

  1. WORKFORCE DEVELOPMENT

Planned training on rare disorders for health professionals and support staff

In this section

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

Campaign resources

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.

Meet your MP

Here is a toolkit of resources to help supporters meet their local MP to share their stories.

Campaign endorsement

This document outlines the campaign goals and has been endorsed by our collective and partners.