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 has online information and resources as well as a comprehensive support group directory. They also have a parent & caregiver guide that is full of information to help if you are raising a child with a rare disorder in New Zealand.
Parent to Parent is a website that helps connect parents who have children with similar needs. They provide support and information to families and whānau of tamariki with disabilities.
Unique is a charitable organisation that provides support, information and networking to families and whānau affected by rare chromosome and gene disorders. They have a range of free Information Guides for specific chromosome and gene disorders.
How the Genetic Health Service NZ can 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 health 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.
Find out more about the Genetic Health Service NZ at the Te Whatu Ora website.
