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Rare and genetic conditionsDisclaimer: This fact sheet is for educational use only. Please consult your doctor or other health professional to make sure this information is right for your child. Resources and servicesIf 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. Contact details are provided in Where to go for information below.
There is also New Zealand Genetic Services which offer diagnosis and counselling relating to familial and congenital conditions.
 Back to TopNew Zealand Genetic ServicesIf your child has been diagnosed with, or is being investigated for, a familial or congenital condition, you may be referred to the New Zealand Genetic Services by your medical professional. There will be no charge for your visit. For advice on how to arrange a referral you may ring the Genetic Services in your region (see their contact details in Where to go for more information).
The following are some of the reasons you may be referred:
Who will you see?
Medical geneticists are doctors with specialist training in medical genetics. You are likely to see them when a diagnosis has not yet been made. Genetic associates are science graduates with further training in medical genetics and genetic counselling. You are likely to see them about a known condition.
What happens?
If you would like more information on the support New Zealand Genetic Services can offer, call them on their toll free numbers listed below. Select the number for your region.
Back to TopWhere to go for informationFamily Information Service 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. Postal Address: Level 3, opposite Outpatients, Starship Children’s Health, Private Bag 92 024, Auckland Physical Address: Level 3, opposite Outpatients, Starship Children’s Health, Park Rd, Grafton, Auckland Phone: 64 9 307 4955 Fax: 64 9 307 4979 Email: ssfis@adhb.govt.nz Website: http://www.starship.org.nz/ New Zealand Genetic Services
NZORD (New Zealand Organisation for Rare Disorders)
NZORD provides New Zealand’s central starting point for online information about rare disorders. Address: PO Box 38 538, Wellington Mail Centre Phone: 64 4 566 7707 Fax: 64 4 566 7717 Email: enquiries@nzord.org.nz Website: http://www.nzord.org.nz/
Parent to Parent International websites
NORD (National Organisation for Rare Disorders) This American website has an A-Z index which provides access to reports on over 1000 rare diseases. The reports contain basic information about each rare disease and provide contact details and websites of related organisations and support groups. You can access an abstract of the full report as well as listings of support groups and related organisations free of charge. There is a fee for obtaining the full report. New Zealand families can obtain one free copy of the full text of the report relating to their child’s particular disorder by contacting the Family Information Service or Parent to Parent. Both these organisations subscribe to the NORD database and are listed above. Website: http://www.rarediseases.org/ Back to TopYour notesEndorsement
This fact sheet was endorsed by PSNZ - 27/09/2005
CopyrightFact sheets are subject to copyright. In the interests of information sharing they may be copied but acknowledgement must be given to PSNZ and Starship Foundation. © The Paediatric Society of New Zealand and Starship Foundation 2005 - 2010
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