Rare Net is a GUaRD Collaborative initiative, delivered in partnership by Genetic Support Network of Victoria and Genetic Alliance Australia.
Many groups are small or volunteer-led and work with limited time and resources. Although the communities they represent may be different, leaders often face similar questions about responding to community needs, sustaining an organisation, supporting volunteers, sharing reliable information, engaging with research and contributing to advocacy.
Rare Net creates a practical space for leaders to connect across condition communities, learn from one another and identify opportunities to work together.
It also provides a two-way connection between community organisations and the GUaRD Collaborative. Leaders can raise emerging needs, experiences and priorities, while GAA and GSNV can share relevant research, consultation, policy and advocacy developments with the network.
Rare Net sessions are shaped by the interests and priorities of participating organisations. They may include:
Some sessions focus on open discussion between community leaders. Others may include an invited speaker or partner where this would support useful dialogue or respond to an issue raised by the network.
Rare Net is for people who lead, coordinate or actively contribute to rare condition, genetic, undiagnosed or related community organisations and networks.
This may include:
Organisations do not need to be large, incorporated or formally staffed. Rare Net welcomes established organisations, small and volunteer-led groups, and emerging community networks.
You do not need to attend every session or contribute to every opportunity. You can participate in the ways that are relevant and manageable for you and your organisation.
Rare Net is shaped by the people and organisations who take part.
Let us know about a challenge, emerging need or question that you think would benefit from shared discussion.
If your organisation has developed a useful resource, approach or way of working, you can express interest in sharing it with other community leaders.
You do not need to give a formal presentation. This could be a short contribution, a facilitated conversation or another format that feels appropriate.
Rare Net may identify opportunities for organisations to contribute to a consultation, inform research, develop a shared resource or collaborate on advocacy.
Each organisation chooses whether and how it participates. Taking part does not mean that you are expected to represent every person affected by a condition or speak on behalf of the wider rare disease community.
Researchers, government, health services and sector partners can contact the GUaRD Collaborative about opportunities to engage meaningfully with rare condition and community support leaders.
Before bringing an opportunity to Rare Net, we consider:
Rare Net is not a mailing list for one-way promotion or participant recruitment. We welcome opportunities that respect the expertise and capacity of community organisations and give them a meaningful role in shaping the work.
Rare Net sessions are held throughout the year. Join the network to receive upcoming dates, topics and participation details.
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Rare Net is designed for people who lead or contribute to community organisations. If you are looking for support for yourself or your family, GAA or GSNV can help you find relevant information, services and community connections.
