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

Newsletter 2018 #6
12 December 2018
Rare is everywhere: Meet Luca | Fair for Rare: Collette's editorial | Australia's Action Plan for rare disease | PHARMAC applications for medicines for rare disorders | NZORD Education Session in Wellington | Rare disorder researchers' meeting
Rare disorder researchers’ meeting
10 December 2018
New Zealand’s first meeting of rare disorder researchers took place at Otago University last month.
Action Plan for rare disease
28 November 2018
The Australian Government has announced support for a National Rare Disease Framework and Action Plan.
Education Session 2019
27 November 2018
NZORD is running a free Education Session for the chance to meet, talk and share with others living with rare disorders. This will be a morning meeting in Wellington with two speakers and a workshop dedicated to addressing some of the challenges faced by those with rare disorders to help in creating a vision for navigating your own complex health journey. The workshop will also offer skills of resilience and being an advocate warrior for yourself or your loved one.
Newsletter 2018 #5
30 October 2018
Rare is everywhere: Meet Samantha | Fair for rare: Collette's editorial | PHARMAC applications for medicines for rare disorders | Rare disease researchers awarded | Researchers' Special Interest Group established | Education session 2019 - save the date | Carers' survey - have your say
Research on Parkinson’s disease
18 October 2018
Research on a rare form of Parkinson’s disease may have wider benefits for future cancer treatments.
Rare Disease Day 2019 story search
2 October 2018
In previous years, NZORD has selected a Poster Child for Rare Disease Day. In 2019 we want to highlight the wider range of personal experiences by featuring the stories of more than one person with a rare disease.
Applications for medicines for rare disorders
1 October 2018
PHARMAC has received 13 supplier funding applications for medicines for rare disorders.

Support for patients and families

Resources for support groups

Rare disease facts and figures

Featured rare disease: Gaucher disease

Gaucher disease, pronounced go-SHAY, is an inherited disease, and people with this condition lack sufficient activity levels of an enzyme called glucocerebrosidase. This enzyme normally helps the body break down worn-out cells and if there is not enough enzyme available then a fatty substance called glucocerebroside accumulates in the spleen, liver, bone marrow and sometimes in the central nervous system. It’s a bit like a recycling or waste disposal system becoming clogged with a fatty residue and not having any detergent to remove it, therefore it causes blockages. These blockages led to a range of symptoms depending on the organ and level of blockage.