Rare & Genetic Conditions

Resources and services for rare and genetic conditions

If your child has a rare and/or genetic disorder, you may find all or some of the following resources and services useful. They complement each other and can help you in different ways. For contact details, see the external links and downloads at the bottom of this web page.

Family Information Service for assisted searching on medical conditions, disabilities and support groups
Rare Disorders New Zealand website for online information and resources and a comprehensive support group directory
Parent to Parent for help with contacting another parent whose child has similar needs

How can the Genetic Health Service NZ help?

The Genetic Health Service NZ offers diagnosis and counselling relating to familial and congenital conditions. If your child has been diagnosed with, or is being investigated for, a familial or congenital condition, you may be referred to the Genetic Health Service NZ by your medical professional. There will be no charge for your visit. For advice on how to arrange a referral, you can ring the Genetic Health Service in your region (see their contact details [1]).

For information about what happens after a referral, who you will see at the Genetic Health Service and what happens during your appointment, see information for patients at the Genetic Health Service NZ website [2].

External links and downloads (see the online version for more information at other websites)

Starship Paediatric Family Information Service [3]

This service provides information to families about children and young people's medical conditions and disabilities and the contact details for parent and community support groups.

Rare Disorders New Zealand [4]

The Rare Disorders New Zealand website is a useful source of information about resources available for patients and their families/whānau living with a rare disorder in New Zealand.

Parent to Parent [5]

[6]Through a network of regional groups and trained volunteer support parents, Parent to Parent provides information and emotional support to families who have a child with a disability, special need or health impairment. Parent to Parent can help if you want to contact another parent whose child has similar needs.
Call free on 0508 236 236.

Genetic Health Service NZ [7]

For patients referred to a clinic through a health professional, this website provides a guide to what to expect at your appointment. See information for patients [2].

Orphanet - portal for rare diseases and orphan drugs [8]

A source of reliable information that is managed by major government organisations in the Eurpopean Union. Orphanet is a reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.

This page last reviewed 07 May 2020.
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