Founded in 1988 by parent and advocate Diane Petrie OAM, Genetic Alliance Australia 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 that connects, advocates for, and empowers people across Australia living with rare, genetic, and undiagnosed conditions.
We are an open, inclusive community where people learn together, share lived experiences and find genuine connection. We welcome anyone whose life has been touched by rare, genetic, or undiagnosed conditions—whether you’re living with a condition, a family member, carer, healthcare provider, researcher, or simply someone who wants to understand and support.
Over more than three decades, we’ve built a collaborative network of families, peer leaders, clinicians, and researchers united by a shared commitment to improving lives—no matter how rare the condition. Today, we continue Diane’s founding legacy: creating an inclusive society where all people with genetic conditions are supported, respected, and recognised for their unique strengths.
A future where genetic advances bring answers, treatments, connection and care that strengthen people and communities at every stage of life – no matter how rare
We connect, support, and advocate alongside people living with rare genetic and undiagnosed conditions—linking families, communities, and systems to improve access to care, elevate lived experience in decisions, and build knowledge, peer connection, and self-advocacy.
We listen with care and respect to prioritise the knowledge and perspectives of those directly affected by rare genetic and undiagnosed conditions.
We believe in a strengths-based approach that recognises the unique potential of individuals and their communities.
We collaborate to share knowledge, build capability across communities, health and research, and amplify our partners’ impact.
We help families and supporters make sense of rare and genetic care, know the next step, and connect with people who understand. What we learn informs our advocacy for a future where care is more responsive and fairer.
A future where every family can access timely diagnosis, joined-up care, and the support to self-advocate with confidence.
We facilitate networks that enable families, peer leaders, and rare condition communities to share knowledge and support one another. Through our rare contact database we connect families navigating similar journeys. We support rare condition peer groups – particularly small, volunteer-led organisations – by providing resources, support and shared infrastructure that amplifies their essential work. We use collaborative advocacy with members and partners to advance shared priorities in rare genetic care.
A future where peer connection is embedded in every rare disease journey: families are routinely matched with others sharing similar experiences, volunteer-led groups are recognised and resourced as essential healthcare infrastructure, and collaborative advocacy ensures both individual stories and collective expertise directly influence care priorities and system design.
We seek to embed lived experience in rare and genomic research to ensure priorities reflect family and community needs and that outcomes are accessible and usable for communities. We partner in studies that improve identification, understanding and diagnosis; support translation of new technologies into clinical care; and advance delivery of family- and person-centred care.
We advocate for policies that make advances accessible to all families.
A future where lived experience shapes every stage of rare disease research, breakthrough discoveries rapidly become accessible care options, and no family is excluded from advances due to location, resources, or systemic barriers. Research communities and families work as true partners, and policy frameworks ensure genomic and therapeutic advances reach every family who needs them.
