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.
Parent to Parent for help with contacting another parent whose child has similar needs [3]
Rare Disorders New Zealand [5] has a helpful Parent & Caregiver guide. [5]It is full of information to help if you are raising a child with a rare disorder in New Zealand.
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 [6]).
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 [7].
This page last reviewed 06 April 2021.
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Links
[1] https://raredisorders.org.nz/
[2] http://raredisorders.org.nz/
[3] https://parent2parent.org.nz/
[4] https://rarechromo.org/disorder-guides/
[5] https://www.raredisorders.org.nz/patient-support/parent-and-caregiver-guide/
[6] https://www.genetichealthservice.org.nz/contact-us
[7] https://www.genetichealthservice.org.nz/for-patients
[8] https://kidshealth.org.nz/node/1565?language=zh-hans
[9] https://kidshealth.org.nz/node/1691?language=zh-hans
[10] https://kidshealth.org.nz/node/1697?language=zh-hans
[11] https://kidshealth.org.nz/node/1696?language=zh-hans
[12] https://kidshealth.org.nz/contact?from=http%3A%2F%2Fkidshealth.org.nz%2Fprint%2F87%3Flanguage%3Dzh-hans