What We Do

Network

We are actively involved in sourcing and distributing evidence-based information on Angelman Syndrome.

We network with our  affiliated organisations, local 

councillors and politicians in NZ, researchers and research teams (NZ and global), professionals  and specialists working with people who have AS, and other AS 

organisations around the world. 

Support and Advocacy

We connect and support families in New Zealand who are affected by AS.

We also support affiliated organisations in NZ that advocate for rare disorders, for AAC (communication support), access to appropriate medication,

an accessible society, inclusion in schools, and the wellbeing of caregivers. 

Resources and Publications

This website is our Primary Resource. It is regularly updated with the most current information on Angelman syndrome.

Families in NZ can contact us for an Information Pack.

 

A range of other publications, resources, media articles

 and relevant links, can be found on our Resource page.  

Grants

We provide small grants for research on Angelman syndrome and/or research on matters affecting social policy and funding that could benefit our families in NZ.

We also provide Family Grants to assist families to attend conferences/workshops related to Angelman syndrome. 

OUR AFFILIATES

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GLOBAL ANGELMAN REGISTERY

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ANGELMAN ACADEMY

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INTERNATIONAL ANGELMAN DAY

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NZ CARERS ALLIANCE

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ACCESS ALLIANCE

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RARE

DISORDERS NZ

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RARE DISEASE

DAY

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TALKLINK

TRUST NZ

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INCLUSIVE EDUCATION ACTION GROUP

EPILEPSY

NEW ZEALAND

 

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