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 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. It is 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:
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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 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.
COLLECT DATA, CREATE CHANGE
Because Angelman syndrome is a rare genetic disorder, collecting data specifically for Aotearoa NZ is important. Data is crucial for:
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Improving Diagnosis
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Raising Awareness
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Facilitating Advocacy
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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!
Enabling Good Lives
The Angelman Network supports the Enabling Good Lives (EGL) approach.
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The Enabling Good Lives approach is unique to Aotearoa NZ.
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The EGL approach came from the community. From 2008 - 2013 hundreds of disabled people and their families in Aotearoa NZ contributed to the development of the EGL approach.
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Based on the Convention on the Rights of Persons with Disabilities, EGL recognises that disabled people belong to networks and cultures e.g. family friends and community. These networks need to be respected as being fundamental to identity, belonging and citizenship.
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Investing in disabled people and their families is central to EGL.
INFORMATION
This website covers a wide range of topics on AS with links to studies and resources for families & specialists, including...
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Views on inclusion, communication, education
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Research on Angelman syndrome
OUR FOCUS
ADVOCACY & INCLUSION
We are members of the Rare Disorders Collective and the 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).
CONNECTION
We connect families through our social media groups, by encouraging local
and by supporting regional gatherings across the motu. We co-founded & celebrate International Angelman Day, to connect and raise awareness globally, and nation-wide.
For free & confidential support services, see Parent to Parent.
Please help support the work we do for Angelman Syndrome in Aotearoa New Zealand. All donations are gratefully accepted and much 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.