Rare conditions are individually rare. This can leave people, families and organisations working on connected challenges without always knowing who else is involved.
Each year, Genetic Alliance Australia brings people from across the rare and genetic community together at NSW Parliament House.
The Annual Forum is an evening to celebrate the people and progress across rare and genetic healthcare, research, advocacy and community leadership. It is also an opportunity to look honestly at what is still missing and what may become possible when people work more closely together.
People living with rare, genetic and undiagnosed conditions and their families are joined by support organisations, health professionals, researchers, advocates, government representatives and partners from across the sector.
The speaker program is deliberately short, leaving time for people to meet, explore the Research and Advocacy Showcase and speak directly with others working on related challenges.
Progress in rare and genetic conditions does not come from one place.
It can begin with families building a community, a support organisation gathering knowledge, a clinician recognising a gap, or a researcher finding a pathway towards diagnosis, treatment or better care.
The Annual Forum brings these different parts of the rare and genetic community into the same room.
The connections made through the Forum can lead to referrals, shared advocacy, research partnerships, new projects and stronger relationships between community, healthcare, research and policy.
The Research and Advocacy Showcase is a central part of the Annual Forum.
It gives rare condition organisations, research collaborations, advocacy initiatives and community projects an opportunity to share their work directly with people who may benefit from it, contribute to it or help take it further.
Many rare condition organisations are small and volunteer-led. Most do not have the resources to hold their own major events or promote their work widely.
The Showcase gives these organisations a visible place within the Forum and an opportunity to connect directly with community members, clinicians, researchers, government representatives and other organisations.
Attendees can walk through the Showcase, speak with exhibitors, ask questions and discover work they may not otherwise encounter.
Rare condition support organisations can exhibit free of charge.
The 2026 event will be Genetic Alliance Australia’s 36th Annual Forum.
This year’s program follows three connected stories showing how community relationships, collaboration and research can contribute to better care and new possibilities for people living with rare and genetic conditions.
Lauren Geatches, BPTF Families – How relationships can create infrastructure, knowledge and opportunity for an ultra-rare community.
Meagan Cross, FAST Australia – What becomes possible when community leadership, clinical care, data and research are connected around treatment development.
Professor Robyn Jamieson, Professor of Genomic Medicine, The University of Sydney – How genomic diagnosis and scientific innovation can create pathways towards treatment and better care.
The 2025 Annual Forum brought together 170 people and featured 21 organisations and projects in the Research and Advocacy Showcase. The evening celebrated lived experience, community leadership, research, advocacy and collaboration across rare and genetic conditions.
The 2024 Annual Forum welcomed more than 150 people to explore how stronger partnerships across community, healthcare and research could help improve equity in rare and genetic care.
You can attend the Forum, take part in the Research and Advocacy Showcase, suggest a future topic, contribute lived experience, volunteer or partner with GAA to help make the evening possible.
Partner support helps us keep attendance free for community members and support organisations, provide free Showcase space for rare condition groups and reduce barriers to participation.
We welcome partners who share our commitment to improving care and support for people living with rare, genetic and undiagnosed conditions and their families.
If you’re interested in sharing your research, advocacy or other work supporting rare communities, contributing an idea to help shape the Forum, or becoming one of our valued sponsors, we’d love to hear from you.
The Genetic Alliance Australia Annual Forum is held on the lands of the Gadigal people of the Eora Nation.
We acknowledge the Gadigal as the Traditional Custodians of the land on which NSW Parliament House stands and pay our respects to Elders past and present. We extend that respect to all Aboriginal and Torres Strait Islander peoples and recognise their continuing leadership in caring for community and Country.
