The Angelman Network is a

Registered Charitable Trust based in New Zealand

CC46746.

Disclaimer: Links to other Internet sites are for the convenience of all web-users. The Angelman Network is not responsible for the availability or content of these external sites and we do not endorse, warrant or guarantee any products, services or information that may be offered at these sites. Always contact your own medical practitioner for any medical advice.

©2018 by The Angelman Network. 

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: The website is our primary resource for sharing the latest

global up-to-date information about Angelman Syndrome. You will find key

information for newly diagnosed families in NZ, general health management

plans, views on inclusion, current research on AS, and a wide range of AS

specific topics for both families and professionals. 

       for those who have Angelman Syndrome, based on the United Nations Convention

       on the Rights of Persons with Disabilities. Read more on inclusion, here.  

  • CONNECTION & SUPPORT: We connect and support NZ families by encouraging

       and assisting with regional gatherings and fundraising activities across the country.

      [For free and confidential support services, see Parent to Parent.]

  • ADVOCACY: The Angelman Network advocates on behalf of families and those

       with Angelman Syndrome in NZ. 

      Angelman Day (IAD) to raise funds and spread awareness of the condition.

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. 

 

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

New Zealand COVID-19 information and instructions to follow

(click on links below)

Official Covid-19 updates

Alert Level 3 and 4 information for people and families who need health and disability support services

Vulnerable people

What you can buy using government disability support funding 

OUR AFFILIATES

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GLOBAL ANGELMAN REGISTERY

ANGELMAN ACADEMY

INTERNATIONAL ANGELMAN DAY

NZ CARERS ALLIANCE

ACCESS ALLIANCE

RARE

DISORDERS NZ

 

RARE DISEASE

 

 

 

DAY

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TALKLINK

TRUST NZ

tLAKLINK TRUST nz logo2.png

INCLUSIVE EDUCATION ACTION GROUP

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ANGELMAN

 

TODAY