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. AS 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. AS has a
prevalence of 1:15,000 and 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 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 celebrate International Angelman Day (IAD). We gather together, raise funds and spread awareness for AS in our local communities.
Its vital to share our stories so that we can lobby for the acknowledgment of family carers as a workforce, as well as for equitable access to health, social care, diagnoses and treatments for all those who live with AS in Aotearoa.
2023 is the 10th anniversary of IAD.
PLEASE support our TEN4TEN4TEN year-long fundraiser.
Funds will go towards establishing an Angelman syndrome registry in NZ and an AS clinic in Auckland, and to support families to access the clinics.
INFORMATION
This website is our primary resource for sharing the latest information about Angelman Syndrome.
You will find:
-
key information for newly diagnosed in NZ
-
health management plans for different age groups
-
views on communication, education and inclusion
-
current research on Angelman syndrome
-
a range of other relevant topics, for families and professionals.
Services
INCLUSION
The Angelman Network encourages a person-centered approach for those who
have Angelman Syndrome, based on the United Nations Convention on the
Rights of Persons with Disabilities.
On 29th Oct 2021, the NZ government announced the formation of a Ministry of Disabled Persons and the national roll-out of Enabling good Lives (EGL). Read more on the announcement here
CONNECTION
We connect and support NZ families by encouraging
community networks and by assisting with regional
gatherings across the country.
Each year The Angelman Network celebrates International Angelman Day with an organised family event that rotates between the 3 main centres in NZ - Auckland, Wellington, Christchurch.
For free and confidential
support services in NZ, see Parent to Parent.
Please help support the work we do for Angelman Syndrome in New Zealand.
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.
All donations are gratefully appreciated.