
The Angelman Network
Connecting and supporting those impacted 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
The Angelman Network is the sole support organisation for Angelman syndrome in Aotearoa NZ. We are a registered Charitable Trust, no: CC46746
What is Angelman syndrome?
Angelman syndrome (AS) is a rare neurogenetic 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. AS has a prevalence of approx.1:15,000 and affects males and females of all ethnic groups, equally.
With good health management and appropriate supports - especially for communication - most people born with Angelman syndrome will have a normal life expectancy and can live fulfilling lives. 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

Raising Awareness
On the 15th February each year, we wear BLUE and celebrate International Angelman Day (IAD). We gather together, raise funds, share resources, and spread awareness for AS in our local communities.
Because AS is rare, it is vital to share our stories & data. With this information, we can lobby for more supports for family carers, equitable access to health, social care, diagnoses, and treatments for all those who live with AS in Aotearoa.
The Angelman Network is raising funds to establish an Angelman syndrome registry and clinic in Aotearoa NZ, and to support families to access the clinics. Your donations CAN make a difference; every contribution counts! Please donate on our TAN Givealittle page.