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.
View the ASAA Strategic Plan here:
Our Collaboration with FAST (Australia)
We are fortunate in Australia to have two dedicated organisations working together to help people with Angelman syndrome and their families achieve the best quality of life.
ASAA is proud to collaborate with Foundation for Angelman Syndrome Therapeutics (Australia) to develop strategies and initiatives that can collectively best serve the Australian AS community.
Both organisations have a core mission to improve the quality of life for our loved ones diagnosed with Angelman syndrome and we both do that in different but complimentary ways. ASAA is focussed on providing family support for all day-to-day aspects of living with AS. The goal of FAST (Australia) is to fund and collaborate in research aimed at improving the quality of life for individuals with AS, and educate on the developments, including sharing where hard-earned donations and fundraising dollars are spent.
Together we are searching for the misdiagnosed or undiagnosed families within the wider Australian community. The greater our collective AS voice, the greater our power to advocate for our community, and the greater the opportunity we have to provide comprehensive support for families, and progress research into therapeutics and treatments for our loved ones.