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 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.
ASAA is a registered not-for-profit incorporated association and is registered under the Associations Incorporation Act 1981.
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. We rely on grants, donations, and testamentary gifts from the community and are grateful for our supporters.
What we do
- We create and foster a community where people and families with Angelman syndrome can belong and be heard.
- We offer support and resources to parents and carers, siblings, extended family members, friends and stakeholders (including healthcare professionals, researchers and educators) of people with Angelman syndrome to ensure that nobody has to travel this journey alone.
- We provide essential support to families who are newly diagnosed, or going through life transitions and challenges.
- 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 raise awareness of Angelman syndrome including through our website, social media, media appearances, stakeholder engagement, publications and presentations.
- We act on behalf of all members by lobbying Government (Local, State and Federal) and promoting the interest of members to other key stakeholders that include the National Disability Insurance Scheme (NDIS), Australian Health Protection Principal Committee (AHPPC), Therapeutic Goods Administration (TGA) and the Disability Royal Commission.
- 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.
- We connect with researchers and promote research programs and clinical trials, providing necessary representation as the key patient advocacy group.
- We work closely with Foundation for Angelman Syndrome Therapeutics (Australia) to represent the needs of the Angelman syndrome community in Australia, supported by our Memorandum of Understanding.