There have been big changes in the Health sector in Aotearoa NZ over the past 5 years. Please be patient while we work on updating this website.
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. More on Angelman syndrome here.
COLLECT DATA, CREATE CHANGE
Because it's a rare genetic disorder, collecting data on Angelman Syndrome (AS) in NZ is essential. Data is crucial for:
-
Improving Diagnosis
-
Raising Awareness
-
Facilitating Advocacy
-
Improving Quality of Life
By compiling data, researchers and our healthcare providers can build a more complete picture of Angelman Syndrome, advancing both treatment options & social change. Please help us create change in Aotearoa NZ for all those impacted by AS. Join the Global Angelman Syndrome Registry 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, its 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 in NZ, an AS clinic in Auckland, and to support families to access the clinics. Your donations CAN make a difference; every contribution counts! Please donate on our TAN Givealittle page.
INFORMATION
This website covers a wide range of topics on AS - with resources for families & specialists, including
-
Views on inclusion, communication, education
-
Research on Angelman syndrome
OUR FOCUS
ADVOCACY & INCLUSION
We collaborate closely with Rare Disorders NZ and Carers NZ/Carers Alliance. We actively promote the Enabling Good Lives (EGL) approach. We encourage a person-centered approach based on the UN Convention on the Rights of Persons with Disabilities(UNCRPD). More on inclusion here.
CONNECTION
We connect families through our social media groups, by encouraging local
and by supporting regional gatherings across the country. We celebrate International Angelman Day, to raise awareness in our own communities.
For free & confidential support services for families, see Parent to Parent.
Please help support the work we do for Angelman Syndrome in New Zealand. All donations are gratefully appreciated.
Donate to our Givealittle Page by clicking on the Donation button.
OR
Make a direct bank transfer:
The Angelman Network Trust
ANZ Bank 06-0817-0352270-00
Please include your name as reference and send us an email if you would like a receipt for tax credits.