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New Zealand Organisation for Rare Disorders

PO Box 38-538,

Wellington Mail Centre

Phone: +64 4 471 2226

Email:

Charities Commission Registration CC22512

Support Groups Network

Some patients with a rare disease may be virtually alone in New Zealand, or there may be just a handful of other cases. Typically, rare diseases are those with less than 30 to 35 new cases a year in NZ among the approx 60,000 babies born each year, or fewer than about 2500 affected people in the whole population. This is based on US and European classifications of "rare" as affecting 1 in 1500 to 2000 people, as New Zealand does not have a formal definition of rare.

For patients who are so far out of the mainstream, support groups can make a huge positive difference.  Support groups can:

  • share direct personal experience
  • provide emotional support
  • provide short-cuts to information and treatment
  • accumulate highly specific information and resources
  • effectively represent the interests of their group

Individual support groups are necessarily small, but have many issues in common. When more than 6000 rare disorders are taken collectively, rare disease support groups may have relevance for around 5% or more, of New Zealand's population. Some estimates give a 10% impact of rare diseases on the whole population, over the total lifespan.

NZORD provides resources to help support groups get established and to facilitate their working effectively.  

See our list of Support Groups.