The Angelman Network
Connecting and supporting those affected 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)
Welcome to The Angelman Network
Kia Ora. Welcome to the website for The Angelman Network.
INFORMATION: The website is our primary resource for sharing the latest global up-to-date information about Angelman Syndrome. You will find key information for newly diagnosed families in NZ, general health management plans, views on inclusion, current research on AS, and a wide range of AS specific topics for both families and professionals.
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. Read more on inclusion, here.
CONNECTION & SUPPORT: We connect and support NZ families by encouraging and assisting with regional gatherings and fundraising activities across the country. [For free and confidential support services, see Parent to Parent.]
ADVOCACY: The Angelman Network advocates on behalf of families and those with Angelman Syndrome in NZ.
AWARENESS: On the 15th February each year we celebrate International Angelman Day (IAD) to raise funds and spread awareness of the condition.
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. With good health management and
appropriate supports - especially for communication - most people born
with Angelman syndrome will have a normal life expectancy. With a
prevalence of 1:15,000 it 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 - kia whiwhi ai ki nga ara reo kia rongohia ai o ratou reo e te their voices can be heard 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
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