Running Rare
Living life with a rare and chronic disease.
| Platform |  | Pricing | Only free issues | Publishes | Weekly |
|---|---|---|---|---|---|
| Issues | 69 | Founded | 4 years ago | Last Issue | 3 months ago |
| Active | |||||
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runningrare.substack.comLatest Issues
Rare Disease Day 2026
Lauren Geatches (current Rare Voices Australia ambassador) and I have a jam-packed week of advocacy in the lead up to Rare Disease Day on 28 February!
Here’s what’s ahead:
WEDNESDAY — 25 FEBRUARY
ACB Canberra 666 Radio — 10:10am....
I left my job because I couldn't cope with another holiday
It is Christmas time, and Jess and I have headed north to a small coastal town just a stone’s throw from the Gold Coast to be with family. The weather is hot. The caravan parks are bursting at the seams, and the beach is splashed with the b...
Lessons from my Father
My father is a humble, softly spoken man and brilliant mathematician. I’ve had the privilege of witnessing his quiet, unwavering dedication to a field that few truly understand and even fewer have been brave enough to challenge. His work ha...
It starts with planting a seed
Running Rare Health Fund EOFY Update
There have been times when contemplating the reality of what the rare disease community is facing has left me unsure how to move forward.
There have been moments when I wanted to give up Running Ra...
Help Henry Get One Step Closer
If your child needed limb-saving surgery, would you choose a subsidised procedure with a pool of surgeons who had performed between them only a handful of similar operations—or pay $600,000+ for the chance to work with a world-leading surge...
Key Facts
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| Subscribers | Engagement | 62 | Monthly Web Visits | ||
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Authors
The writers behind this newsletter.
When I was diagnosed with a rare disease in my early 20’s my eyes were opened to the difficulties faced by an estimated two million Australians living with a rare disease.
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