Rare & Genetic Conditions

Rare & Genetic Conditions

Helpful resources and services if your child has a rare and/or genetic disorder.

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Resources and services for rare and genetic conditions

If your child has a rare or genetic disorder, you may find the following resources and services useful. They complement each other and can help you in different ways.

Rare Disorders New Zealand website for online information and resources and a comprehensive support group directory

Screenshot of the NZ Rare Disorders website

Parent to Parent for help with contacting another parent whose child has similar needs

Screenshot of Parent2Parent website

Rare Chromosome & Gene Disorder Guides has free Information Guides for specific chromosome and gene disorders. 

Screenshot of the Rare Chromosome Guides website

Rare Disorders New Zealand has a helpful Parent & Caregiver guide. It is full of information to help if you are raising a child with a rare disorder in New Zealand. 

Screenshot of Rare Disorders NZ Parent and Caregiver Guide

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).

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. 

 

External links and downloads

Rare Disorders New Zealand

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

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

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. 

Orphanet - portal for rare diseases and orphan drugs

A source of reliable information that is managed by major government organisations in the European 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.

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This page last reviewed 06 April 2021.

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