The Angelman Network
Connecting and supporting those affected by Angelman Syndrome (AS)
Te Hononga Angelman
kia whai hononga me te tautoko hoki i a rátou e pá kii ana ki te mate Angelman Syndrome (AS)
Kia ora. Welcome to the website for The Angelman Network
INFORMATION:
This website is our primary resource for sharing the latest information
about Angelman Syndrome. You will find:
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key information for newly diagnosed in NZ
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general health management plans for different age groups
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views on communication, education and inclusion
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current research on Angelman syndrome
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and further topics relevant for both families and professionals.
INCLUSION:
The Angelman Network encourages a person-centered approach for those who
have Angelman Syndrome, based on the United Nations Convention on the
Rights ofPersons with Disabilities. Read more on inclusion, here.
CONNECTION:
We connect and support NZ families by encouraging
community networks and by assisting with regional
gatherings across the country. [For free and confidential
support services, see Parent to Parent.]
AWARENESS:
On the 15th February each year we celebrate International Angelman Day
(IAD) to raise funds and spread awareness of the condition. Short film about Alice - Nelson, New Zealand
What is Angelman syndrome?
Angelman syndrome (AS) is a rare neuro-genetic condition caused by a
reduction of expression of the UBE3A gene located on chromosome 15.
It is not a degenerative disease nor caused by anything parents may
have done before or during pregnancy. With good health management
and appropriate supports - especially for communication - most people
born with Angelman syndrome will have a normal life expectancy. With
a prevalence of 1:15,000 it affects males and females of all racial/
ethnic groups equally. Read more on Angelman syndrome here.
New Zealand COVID-19 information
Communication Support:
Our Vision / O motor kitenga
That people with Angelman syndrome are: Te tangata mau i te mate AS ka:
- accepted and acknowledged as unique individuals - whakaaetia, manakotia hoki kia u ki to rátou mana ake
- given access to a full language system (AAC) so that - kia whiwhi ai ki nga ara reo kia rongohia ai o ratou reo e te their voices can be heard katoa ma roto i te àpititanga me etahi atu whakamòhiotanga
- valued as contributing members of their community - kia whai hua rátou hei tángata tákoha nó tó rátou hápori
"Ehara taku toa i te toa takitahiengari he toa takimano / my strength is not that of the
individual but that of the collective" - Maori proverb
