A new diagnosis of Angelman Syndrome can be an extremely stressful and uncertain time for families. 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; 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. 

 

State & National Angelman Associations

Australia has a national Association hosting bi annual conferences for families. 

Angelman Syndrome Association

Angelman Syndrome Association of Western Australia 

Queensland Angelman Syndrome Association

Other Organisations

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.
Centrelink/State Disability Agencies ~A diagnosis of Angelman Syndrome makes you eligible for certain payments and services for example;  the Better Start Initiative for children Under 6, a Carer Payment and/or Allowance (depending on your situation), access to therapies and services like respite.  Please contact your local agencies for further details.  

 

The future

The most asked question on diagnosis would probably be "What will my child be like?" No child with Angelman Syndrome is the same; read about variability in Angelman Syndrome here.>

Cure

Our definition of a "cure" is a rescue of the symptoms of Angelman Syndrome. Read more about why a cure is possible and the roadmap towards it here. >

SEIZURES

Will my child have seizures and do I need a neurologist?>

other children

Could anyone else in my family have a child with Angelman Syndrome? >

Therapies

There are a number of different therapies available to help your child reach their highest potential. Read more about some examples here.>


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