Rare & Genetic Conditions

Rare & Genetic Conditions

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

Screenshot of the NZ Rare Disorders website

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

Screenshot of Parent2Parent website

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

Screenshot of the Rare Chromosome Guides website

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 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. You can find the contact details on their website.

The genetic health service NZ website has lots of information, including:

  • what happens after a referral
  • who you will see at the Genetic Health Service
  • what happens during your appointment

See the genetic health service NZ website for more information. 

 

External links and downloads

Rare Disorders New Zealand

The Rare Disorders New Zealand website is a useful source of information with resources available for patients and 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 whānau who have a child with a disability, special need or health impairment. Parent to Parent can help if you want to connect with another parent whose child has similar needs.

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.

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 13 May 2024.

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