New Zealand Organisation for Rare Disorders
PO Box 38-538,
Wellington Mail Centre
Phone: +64 4 471 2226
Charities Commission Registration CC22512
Support Groups Network
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.