About Us

Smith-Magenis Syndrome Australia is the national support network for Smith-Magenis Syndrome (SMS) and a registered Australian not-for-profit organisation. We were founded with a common desire to support children diagnosed with SMS and their families, drive a strong community connection and promote broader awareness of SMS. Our work includes raising awareness, interfacing with the specialist and educational community, disseminating the latest research and guidance, assisting families navigate government services, developing a strong network of families and professionals, and facilitating our biennial SMS Australia family camp and conference.

PRISMS International Partnership Program

PRISMS, Inc. is the central advocacy, education and support organisation for individuals with SMS, their families and the processionals who service them. Smith-Magenis Syndrome Australia is a member of the PRISMS International Partnership Program. As a member, we along with PRISMS and other international affiliate partners, strive to raise awareness of the common issues that people living with SMS and their families face, irrespective of where they live in the world. Global cooperation benefits the entire SMS community. This partnership lays the groundwork for future joint initiatives and increased transpacific collaboration for the entire SMS community.

At Smith-Magenis Syndrome Australia, we believe in the strength and resilience of individuals and families living with Smith-Magenis Syndrome. We believe in the power of community, support, and awareness to make a positive impact.

Our Mission

Our mission is to support and empower Australian families living with Smith-Magenis Syndrome through awareness, collaboration, and education

Our Vision

Our vision is to create a connected and informed community where individuals with Smith-Magenis Syndrome and their families can gain access to the supports they need, and we can foster understanding and community inclusion.

Awareness

We partner with disability, genetics, and SMS organisations
locally and globally, to raise awareness of the common issues that people living with SMS and their families face.
We leverage digital platforms and direct community engagement to drive knowledge and advocacy.

Support & Education

We serve as the first ‘port of call’ for families who are navigating a new diagnosis, providing them with critical information, resources, and connection to experienced
professionals via our specialist registry. We facilitate a biennial Australian SMS camp which is tailored to the needs of people diagnosed with SMS while providing respite, education, and connection for families. The camp welcomes educators, medical professionals, allied health specialists, and support service providers, who benefit from guest Q&A panels, workshops and community interaction.

Community

Through online forums and community activities, we enable a supportive family network which offers practical advice, resources, advocacy, empathy, and fosters a true sense of belonging with those who have shared lived experiences.