The Angelman Network

The Angelman Network is a Registered Charitable Trust based in NZ that connects and supports those affected by Angelman syndrome (AS)

Auckland

The Angelman Network is a family/whānau driven charitable trust based in New Zealand that connects and supports those affected by Angelman syndrome (AS). The organisation aims to help improve the lives of New Zealanders impacted by Angelman syndrome - a rare neurogenetic condition characterized by global developmental delays and severe speech impairment.

Individuals with Angelman Syndrome have a movement/balance disorder, many have a seizure disorder, which at times can be difficult to treat, and most need very little sleep when young. Despite these difficult challenges, most children with AS are usually very sociable, and display a happy demeanour. Their smiles can light up a room!

We are a Registered Charitable Trust (Charities Commission no: CC46746) and are 100% volunteer-run. We have a wide international network and our website is a source of up-to-date information on this rare condition. www.angelman.org.nz

International Angelman Day 2024 16 February 2024

Global research on Angelman syndrome is looking very promising, and there are several potential treatments on the horizon. The Angelman Network is keen to catch up with other countries and establish an Angelman clinic (in Auckland) - to collate clinical data, improve standards of care for AS in NZ, support our kiwi families, and provide a potential trial site.

This project will come with ongoing expenses - to manage the clinics, and to help families to access the clinics. Please help us to improve the lives of those who live with Angelman syndrome in NZ. We appreciate and thank you for any donations.

Share this update

Read 2 more updates