The Angelman Network is a Registered Charitable Trust based in NZ that connects and supports those affected by Angelman syndrome (AS)
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 neuro-genetic 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. Most children with AS are usually very sociable, and display a happy demeanour.
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 reliable source of up-to-date information on this rare condition. www.angelman.org.nz
More about us
The Angelman Network connects and supports those impacted by Angelman Syndrome (AS) - a rare condition that affects approx. 1:20 000. It is a neuro-genetic disorder characterized by global developmental delays and severe speech impairment. Individuals with AS can also have a movement/balance disorder and many suffer with life-threatening seizures. Despite these severe challenges, they display an exceptionally happy disposition with their own unique and affectionate personalities.
The Angelman Network accesses and distributes up-to-date information about AS sourced locally and internationally via our website and social media sites. We support our NZ parents/care givers and help raise awareness of AS in New Zealand - among clinicians, therapists, schools, agencies and the community. We also pursue opportunities to promote further research related to AS. www.angelman.org.nz
What is International Angelman Day?
International Angelman Day (IAD) is observed annually on the 15th February to raise awareness worldwide for Angelman Syndrome (AS) – a rare neurogenetic disorder that affects chromosome 15, resulting in intellectual and developmental delay. It affects about 1 in 15,000 people. The date selected is in recognition of the 15th chromosome affected, and February is International Rare Disease month.
The purpose of this day is to:
- Raise awareness worldwide of the condition
- Mobilise people to action & encourage fundraising for the individual organisation in their country
- Promote research and educational resources in the organisation’s own country
- Remember those people with Angelman Syndrome who are no longer with us
Please help us by donating to our cause as we unite to commemorate this special day, each year. Thank you!