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
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. AS 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. AS has a
prevalence of 1:15,000 and 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 their voices can be heard / kia whiwhi ai ki nga ara reo kia rongohia ai o ratou reo e te 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
AWARENESS
On the 15th February each year we celebrate International Angelman Day (IAD) - to gather together, raise funds and spread awareness for the condition in our local communities.
A.S. 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
-
health management plans for different age groups
-
views on communication, education and inclusion
-
current research on Angelman syndrome
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a range of other relevant topics, for 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 of Persons with Disabilities.
On 29th Oct 2021, the NZ government announced the formation of a Ministry of Disabled Persons and the national roll-out of Enabling good Lives (EGL). Read more on the announcement here
CONNECTION
We connect and support NZ families by encouraging
community networks and by assisting with regional
gatherings across the country.
Each year The Angelman Network celebrates International Angelman Day with an organised family event that rotates between the 3 main centres in NZ - Auckland, Wellington, Christchurch.
For free and confidential
support services in NZ, see Parent to Parent.
