Supporting families of children with Trisomy 13

Connecting and supporting kiwi families and raising awareness of Trisomy 13 in New Zealand.

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About Trisomy 13

Trisomy 13, also called Patau syndrome, is a chromosomal condition where a person has three chromosome 13’s instead of two. It happens when cells divide abnormally during reproduction. There are two kinds of trisomy 13. Babies can have three copies of chromosome number 13 in all of their cells, or in only some of them.

Due to the presence of several life-threatening medical problems, many infants with trisomy 13 die within their first days or weeks of life. Only five percent to 10 percent of children with this condition live past their first year. There are very few babies with Trisomy 13 in New Zealand and as such very little is known about this condition in New Zealand, and we’re here to change that.

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Why We Exist

We understand that when you receive a diagnosis of Trisomy 13, it is a challenging time, and you are looking for information and answers, so you have come to the right place.

Trisomy 13 Awareness and Support New Zealand is an initiative driven by the community, started to help bring families who have children with Trisomy 13 together by providing access to New Zealand specific information on Trisomy 13 and a place to connect together.

Our aim is to provide New Zealand specific information on what support is available, build a support network and engage with New Zealand businesses and the medical community to provide the very best support to families.

CONNECT WITH FAMILIES

Connect with real families who have children with Trisomy 13. We have created a safe, closed community Facebook group where you can connect with other families, ask questions and share experiences.

JOIN OUR FAMILY COMMUNITY

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Resources

We are continuously gathering more information and resources about Trisomy and to support our families. Check them out here and if you’d like to contribute, get in t ouch.

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Supporters

See who our incredible supporters are and what they’re up to in making our collective mission possible. If you’d like to get involved, we’d love to hear from you.

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