About Our Organisation
Angelman Syndrome Association Australia (ASAA) is the key advocacy and peer support organisation for people living with Angelman syndrome and their families in Australia. We are an all-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, disability and Angelman organisations, raising awareness of the needs of people and families living with AS, and advocating at all levels of government, to create a better world for people living with AS and their families.
ASAA is a registered not-for-profit incorporated association and is registered under the Associations Incorporation Act 1981.
Proudly providing Advocacy, Support and Awareness for over 30 years.
Our Mission
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:
ADVOCACY:
We create and foster a community where people and families with Angelman syndrome can belong and be heard. We advocate with the 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 connect with other Angelman syndrome associations and foundations across the globe, as well as partnering with peak bodies in Australia that focus on rare diseases, people with a disability, and social inclusion to increase our advocacy reach.
SUPPORT:
We provide essential support to families who are newly diagnosed, or going through life transitions and challenges. This includes parents and carers, siblings, extended family members, and friends. 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 connect individuals, clinicians, support providers and researchers to ensure people with Angelman syndrome receive appropriate opportunities, services and support at all stages of life. We develop and identify quality resources to help families in their day-to-day living, and sponsor events to build community and connect families, supporters and allies.
AWARENESS:
We develop and provide resources to raise awareness, inform and educate AS families, medical and allied health professionals, educational providers, and the general public about Angelman syndrome.
We raise awareness of Angelman syndrome including through our website, social media, media appearances, stakeholder engagement, publications and conference presentations.
RESEARCH:
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 clinical support and research and to encourage research in Australia.
FUNDRAISING:
We fundraise to provide support for Angelman syndrome individuals and their families in times of crisis, and to contribute to hosting our biannual conference. We rely on grants, donations, and testamentary gifts from the community and are grateful for our supporters.
Become a Member
- For information about becoming a member of ASAA visit our ‘Get Involved’ page. It’s free for family members/guardians.