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.

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. 

Int Angel Day logo HR CMYK.jpg

A.S. INFORMATION

This website is our primary resource for sharing the latest information about Angelman Syndrome. 

You will find:

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.

Read more on inclusion here.  

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.