NZORD

PHARMAC’s Rare Disorder Subcommittee
13 February 2019
PHARMAC has released a report of the Rare Disorder Subcommittee’s discussion about the 13 funding applications (for ten medicines) for rare disorders.
Media release: Rare Disease Day 2019: Rare is Everywhere
12 February 2019
Four-year-old Evie from Tauranga is one of the most unique children in the country – and the world.
Newsletter 2019 #1
11 February 2019
Rare is Everywhere: meet Sarah, Evie, Preston and Jethro | Fair for Rare: Collette's editorial | Rare Disease Day 2019 | Share for Rare fundraiser | Education Session | Rare Disease Day Awards
NZORD advocacy and services
8 January 2019
Relationship manager Lisa Foster spoke to the Tuberous Sclerosis conference last year.
Consumer voices review 2018
19 December 2018
PHARMAC has released a report and action plan from their review of the role of the consumer voice in their work.
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.

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.