Founded in 1988 by parent and advocate Diane Petrie OAM, Genetic Alliance Australia (formerly the Association of Genetic Support of Australasia Ltd) began as one person’s determination to ensure no family would face a rare genetic condition alone. What started as grassroots support has grown into a nationally recognised umbrella organisation.
Our membership includes both individuals and organisations because we believe stronger connections create stronger communities. Alongside supporting individuals and families, we create opportunities for rare condition and community support organisations to connect, collaborate, share knowledge and access practical support that strengthens their communities.
Our community spans hundreds of rare genetic and undiagnosed conditions, bringing together individuals, families, carers, peer leaders and support organisations from across Australia. We are especially committed to supporting people whose conditions are so rare that no dedicated support group exists.
By bringing people together across conditions, we hope to strengthen communities, share knowledge and advocate for lasting change.
Over more than three decades, we’ve built a collaborative network united by a shared commitment to improving lives. Whether you’re living with a condition, supporting a family member, leading a support group, working in healthcare or research, or simply wanting to better understand and support others, you’re welcome in our community.
A future where genetic advances, treatments, connection and care are within reach for every person, no matter how rare.
We connect, support, and advocate alongside people living with rare genetic and undiagnosed conditions.
We link families, communities and systems to improve access to care, build knowledge, peer connection, and self-advocacy.
People with lived experience are experts in their own lives.
Every person, family and community has unique strengths to recognise and build on.
Equity requires collaboration. We achieve more when we work together than we ever could alone.
