About Our Organisation
Angelman Syndrome Association Australia is a volunteer committee consisting of family members of people living with Angelman syndrome (AS).
The committee dedicate their time and expertise to supporting families, working with other rare disease and Angelman organisations, and advocating at all levels of government, to create a better world for people living with Angelman syndrome.
Our mission is really quite simple. We exist to support, inform, educate, network, promote research, and to advocate for families affected by Angelman syndrome.
We achieve this through:
SUPPORT AND ADVOCACY:
We support families on their diagnostic journey and through all stages of life, connecting with the AS community at a local, state, and national level. We develop and identify quality resources to help families in their day-to-day living.
We advocate with government on matters such as health, NDIS, and quality care, and contribute to Royal Commissions and proposed laws and regulations that impact our AS loved ones and their families.
We develop and provide resources to inform and educate AS families, medical and allied health professionals, educational providers, and the general public about Angelman syndrome.
We promote medical, therapeutic, and educational research that will benefit families and individuals with Angelman syndrome. We collaborate with the Foundation for Angelman Syndrome Therapeutics (Australia) to keep the community up to date with research and to encourage research in Australia.
We fundraise to provide support for Angelman syndrome individuals and their families in times of crisis, and to contribute to hosting our biannual conference.