Rare community leaders often support people through diagnosis, uncertainty, changes in health, trauma, grief and bereavement. Many also bring their own lived experience to this work.

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.
The sessions are for peer support group leaders, family liaison contacts and advocates who regularly provide support, information or connection within rare, genetic or undiagnosed communities.
You might lead an organisation, coordinate a peer group, respond to community enquiries, support families following diagnosis or loss, or hold an informal leadership role in your community.
Each session combines:
Sessions are shaped around the realities of supporting rare communities. Topics may include:
Peer supervision is a structured reflective practice. It creates space to consider the emotional and relational parts of community support, think through difficult situations, strengthen boundaries and learn from the experience of others.
These sessions are not individual counselling, crisis support or clinical supervision. They do not replace personal therapeutic support or advice from an appropriately qualified professional.
The value of the group depends on trust. Participants are asked to protect one another’s privacy, leave out identifying details about community members and not repeat personal stories outside the session.
You can contribute at your own pace. You do not need to share anything you would prefer to keep private.
If you support a rare, genetic or undiagnosed community and this program sounds useful, please get in touch. We can let you know about upcoming sessions and welcome ideas for future topics.
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