INTRODUCINGRare ACT
The first step towards building a dedicated organisation for people living with rare or undiagnosed conditions, and for the families, carers and communities who support them, across Canberra and the surrounding region.
We believe in a coordinateD, visible and supported Rare community.
Rare ACT is a new, community-led initiative created by rare disease advocates and families in Canberra and the ACT region. Many of us have spent years navigating the rare disease system – often feeling isolated, unheard, or unsure where to turn.
We realised there was no dedicated space for rare families in the ACT, so we decided to build one together.
Rare ACT, at this stage, is less an organisation than a very hopeful set of scaffolding poles and a strong sense that something ought to be built.
There is no headquarters, no funding, no formalised infrastructure humming away in the background.
Not yet. What we do have is a clear direction, a growing sense of purpose, and the fairly obvious belief that people living with rare and undiagnosed conditions in the ACT deserve something made with them in mind, rather than something they have to awkwardly squeeze themselves into.
What Rare ACT becomes will depend, in the best possible way, on the people who step into it. Your experiences, your questions, your needs, your frustrations, your knowledge, your introductions, your quiet “actually, this is what would help” moments — all of these will shape it in ways we can’t yet predict. And really, that’s the point.
So this is where we begin.
If you’re living with a rare or undiagnosed condition, caring for someone who is, or simply want to support this community in some useful and human way, we’d love you to join us. For now, we’re starting with a WhatsApp group and a mailing list — modest beginnings, perhaps, but then most worthwhile things start with someone putting up a folding table and saying, “Right, let’s see who turns up.”
We hope you will join us,
Lauren Geatches (BPTF Families)
Matthew Treanor (Peutz-Jeghers Syndrome)
Tim Fulton (Adult-Onset Still’s Disease / Running Rare)
GET started
Have Questions?
Send us a quick note and let’s figure things out together.