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New Horizons: The New Zealand Rare Disease Day Symposium

NZORD hosted a one-day symposium for Rare Disease Day 2018 on 22 February in Auckland, bringing together clinicians and people living with rare disorders to share information and experiences.

View the speakers' presentations.

Newsletter 2018 #2
19 April 2018
Greetings from the NZORD Chief Executive | Latest updates from our website | What have we been up to? | Rare Disease Day update | Rare is Everywhere: Stories Project | Conference and meetings
Carers Alliance a collective voice
17 April 2018
NZORD attended a meeting of the Carers Alliance at Parliament last week.
NZORD and the Minister of Health
10 April 2018
Last week NZORD’s Relationship Manager Lisa Crawford was able to speak directly to the Minister of Health, Dr David Clark.
NZ Pompe Disease Conference 24 March Auckland
29 March 2018
NZ Pompe Network worked tirelessly to make this conference a reality and bring together all communities of interest for Pompe disease.
Mental health inquiry
28 March 2018
The Government has committed to setting up an inquiry into mental health as part of its first 100 days’ work programme.
Rare disease group calls on Govt to honour election pledge
27 March 2018
The New Zealand Pompe Network has called on the new Government to honour its election pledge to establish a separate fund for rare diseases like Pompe Disease.
Equal access to healthcare
15 March 2018
NZORD’s Relationship Manager Lisa Crawford recently attended two conferences focusing on health and communities.
NZORD continues to fight for equity for people with rare disorders
7 March 2018
NZORD is seeking a meeting with the Minister of Health, David Clark, to follow up a number of points discussed in a recent interview on Radio New Zealand.

Support for patients and families

Resources for support groups

Rare disease facts and figures

Featured rare disease: Dyskeratosis Congenita

Picture of chromosome replication Our Rare Disease Day poster child Gabrielle has a rare genetic disorder called dyskeratosis congenita (DC). DC is a telomere biology disorder where mutations in specific genes lead to abnormally short telomeres. These shortened telomeres create a cellular vulnerability with a higher risk of error during cell replication and cause an array of serious health consequences. DC is estimated to occur in one in a million people.