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Newly Diagnosed

A new diagnosis of Angelman Syndrome can be an extremely stressful and uncertain time for families. We answer the above phone line at all reasonable hours of the day and night and are happy to talk with you about the research into Angelman syndrome as well as our lived experiences as Angelman parents. We can also connect you with others who might be in similar situations – you do not have to do this alone. If you, or someone you know, need to speak with someone please contact Beyond Blue.

In consultation with the Australian Angelman Syndrome community, this page will be constantly evolving. If you have a suggestion of what you would like to see here please email us.

There is a fantastic community of people who are dealing with Angelman Syndrome either as a family member, as a teacher or caregiver, or as a friend.

There are numerous ways to link into the community and get involved. Make sure you subscribe to FAST at the top of this page to stay up to date with fantastic events happening across Australia. Connect to social media using the icons at the top right of this page.

Colin Farrell

Actor and father

“Anything anyone can do to raise awareness is greatly appreciated. No gesture too small. No such thing as the insignificant word or deed.”

National Angelman Association

The Angelman Syndrome Association Australia (ASAA) provide family support on accessing everyday therapies, such as speech, physio, and occupational therapies, accessing services and navigating the National Disability Insurance Scheme (NDIS). The ASAA have state-based groups and host biennial conferences for families; visit their website for further information.

Other organizations

Rare Voices Australia (RVA) ~ RVA is Australia’s national organisation advocating for those who live with a rare disease. RVA provides a strong common voice to promote for health policy and a healthcare system that works for those with rare diseases. RVA works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare diseases in Australia. RVA are the unified voice of ALL Australians living with a rare disease. An estimated 6-8% of the total population of Australia are affected by rare diseases.

Epilepsy Australia ~ Epilepsy Australia is the national coalition of Australian epilepsy organisations working together to keep our communities informed on the latest medical breakthroughs, social research, publications, news and policy about epilepsy. Their vision is for inclusive communities where people with epilepsy can live and participate free of stigma and discrimination. Find your state organisation here.

NDIS~ A person diagnosed with Angelman syndrome may be eligible for the National Disability Insurance Scheme for funding to access to therapies and services like respite as well as equipment. The Angelman Syndrome Association Australia have developed some amazing resources to assist with navigating this process and you can contact them using the details above.