NZORD

Rare is Everywhere

Meet some of the 377,000 people living with a rare disorder in New Zealand and share your own personal story

NZORD sponsors prizes for best student presentations
8 June 2018
To recognise and encourage future rare disease researchers, NZORD will this year sponsor prizes for the best student presentations at the Queenstown Satellite Meeting on Rare Brain Diseases.
Community conversations 2018
8 June 2018
PHARMAC is visiting towns across New Zealand to get feedback on the role of consumer voice in the work that they do.
Living with a Rare Condition: the Effect on Mental Health
31 May 2018
A UK report highlights the huge impact on emotional wellbeing and mental health of living with a rare disease.
PHARMAC releases new Gaucher disease treatment proposal
30 May 2018
PHARMAC has released a consultation regarding proposed changes to the funded enzyme replacement therapy (ERT) for patients with Gaucher disease.
International support for NZORD
29 May 2018
NZORD has received letters of support from international patient groups.
NZORD submission to Mental Health Inquiry
17 May 2018
People with rare disorders are more likely to experience mental stress and depression.
Rare disease Mum: Why is the only group that helps us being demolished?
16 May 2018
A mother of a young boy with a rare disease spoke to Kate Hawkesby on Newstalk ZB about the need NZORD fills in the community.
Dear Prime Minister Ardern
14 May 2018
I am writing with my serious concerns relating to the Ministry of Health’s funding of the New Zealand Organisation for Rare Disorders (NZORD).

Support for patients and families

Resources for support groups

Rare disease facts and figures

Featured rare disease: Homocystinuria (HCU): A treatable metabolic disorder

The homocystinurias are a group of inherited rare metabolic disorders caused by the build-up of the amino acid homocysteine and its metabolites. When these accumulate and reach high levels they become toxic. The most common type is known as classical homocystinuria (HCU), which affects 1 in 200,000 people worldwide. This affects the eyes, skeleton, nervous system and vascular system, with varying severity depending on the genetic defect involved and management with diet and treatment. In New Zealand, HCU is included in the disorders screened at birth by newborn screening. Unfortunately this screening does not detect all cases of HCU and does miss patients. HCU is treatable, with a treatment plan tailored to the individual, involving special diets and supplements. Early diagnosis is vital and awareness within the health sector so that the testing is completed when patients present with the range of symptoms is extremely important.