What We Do
Networking involves researching, sourcing, sharing, and distributing evidence-based information on AS. We actively 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.
Advocacy and Support
We connect and support families in New Zealand who are affected by AS and we advocate on their behalf.
We also actively support affiliated organisations in NZ that advocate for rare disorders, the Right to a Voice, access to appropriate medication,
sufficient respite opportunities, 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.
We provide 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.