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
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. AS has a prevalence of 1:15,000 and affects males and females of all racial/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.
Our Vision / O motor kitenga
That people with Angelman syndrome are / Te tangata mau i te mate AS ka:
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accepted and acknowledged as unique individuals / whakaaetia, manakotia hoki kia u ki to rátou mana ake
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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
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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 celebrate International Angelman Day (IAD). We gather together, raise funds and spread awareness for AS in our local communities.
Because AS is rare, its vital to share our stories in order to lobby for more supports for family carers, as well as for 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!
INFORMATION
This website is our primary resource for sharing the latest information about Angelman Syndrome in NZ:
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Info for newly diagnosed
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Health management plans for different age groups
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Views on communication, education and inclusion
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Current research on Angelman syndrome
Plus other relevant topics for families and professionals.
Our Focus
ADVOCACY & INCLUSION
We collaborate with Rare Disorders NZ, Carers NZ, Access Matters/Access Alliance, and Talklink, to advocate for the best support for people with AS and their families throughout NZ.
Read more on the Enabling Good Lives (EGL) approach
here. We encourage a person-centered approach for those who have Angelman Syndrome, based on the United Nations Convention on the Rights of Persons with Disabilities.
CONNECTION
We connect NZ families by encouraging community networks and regional gatherings across the country. For free and confidential support services in NZ, see Parent to Parent.
Each year, our NZ Angelman community celebrates International Angelman Day When possible we hold family events that rotate between the 3 main centres in NZ - Auckland, Wellington, Christchurch.
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.