There are some people who turn their hardest chapter into a compass.
For Tim Fulton, that compass now points toward 7,000 destinations.
Seven thousand known rare diseases.
Seven thousand communities.
Seven thousand stories that too often go unheard.
On Rare Diseases Day, we pause to reflect on what “rare” actually means. Because while any one diagnosis might affect only a small number of people, collectively rare diseases are not rare at all.
They are common in their impact.
Common in their delay.
Common in their isolation.
And Tim has made it his mission to make the invisible visible.
Rare Diseases Day? Whats That?
Rare Diseases Day is held on the last day of February each year. It exists for a simple but urgent reason: to raise awareness of rare diseases and the challenges faced by individuals and families living with them.
Globally, more than 300 million people live with a rare disease. In Australia, estimates suggest around 2 million people are affected. Many are children. Many are navigating complex, lifelong conditions.
And the system is not built for them.
The average time to diagnosis is around seven years. Seven years of appointments. Seven years of uncertainty. Seven years of wondering if it is “all in your head” before finally having a name for what is happening to your body.
Tim knows that experience intimately.
The Hospital Bed Moment
There is a moment Tim often returns to.
Lying on a hospital bed.
Unable to move.
No clear diagnosis.
No roadmap.
“In tough situations there are so many things outside of your control,” he says. “When I found myself lying there, having no idea what was going on, I realised I had to make the conscious decision to control the only thing left in my control, my attitude.”
It was not naïve optimism.
It was survival.
After failing multiple treatments, with statistics stacked against him, Tim did not know whether remission was possible. What he did know was this: he wanted to be able to look himself in the mirror in twelve months and say he had given it everything, regardless of the outcome.
He has been repeating that process for the past ten years.
That is resilience. Not the glossy kind. The gritty, quiet, daily choice kind.
Running Rare: A Movement, Not Just a Marathon
Out of those dark days came something powerful.
Running Rare.
A life-long journey to dedicate a run to each of the 7,000 known rare diseases, raising awareness and funds along the way.
Seven thousand runs.
Seven thousand stories.
Seven thousand reasons to keep going.
For Tim, running is not about pace. It is about presence.
Each kilometre is an act of solidarity. Each finish line is a reminder that while an individual diagnosis might be rare, collectively the rare disease community is large, diverse and deserving of attention.
He is hugely proud of starting Running Rare, and now stepping into leadership through Running for Resilience. It is not simply a project. It is the resource he wishes he had during the darkest days of his life.
That line matters.
“Making the invisible, visible. I deeply care about creating the resources I wish I had.”
This is the heart of People with Purpose. Turning lived experience into leadership.
Rare, But Not Alone
One of the biggest misconceptions about rare diseases is that they are isolated.
In reality, they intersect with disability, mental health, employment, education, and family life. They affect siblings. Parents. Partners. Workplaces.
Rare diseases can mean:
- Delayed diagnosis.
- Limited or inequitable treatment pathways.
- Reduced access to funding.
- Fragmented support systems.
- Unnecessary disability because systems are not designed for complexity.
In Canberra, where we pride ourselves on strong institutions and accessible services, rare diseases remind us that “available” is not always “accessible”.
The rare disease community often finds itself navigating a maze. Specialists who have never seen the condition. Funding pathways that do not neatly align. Support services designed for more common diagnoses.
The emotional toll is layered on top of the physical one.
Isolation is real.
That is why visibility matters.
Athlete, Advocate, Human
Tim’s story does not begin in a hospital.
He represented Australia at two world championships in ice hockey at under 18 and under 20 level. He understands high performance. Discipline. Training for what others do not see.
Today, when he is well, he loves moving his body with friends. Spending time with his wife Jess. When energy levels dip, a good book or documentary brings contentment.
He is not defined by diagnosis. But he refuses to ignore it either.
That balance is powerful.
Rare diseases can consume identity. Tim’s work shows they can also clarify it.
The Power of Collective Rare
“Our individual diagnosis might be rare,” Tim says, “but collectively rare diseases are quite common.”
This reframing shifts everything.
Instead of small, disconnected groups, we see a large, interlinked community.
Instead of niche advocacy, we see mainstream responsibility.
Instead of pity, we see partnership.
Rare Diseases Day is not about sympathy. It is about solidarity.
It is about recognising that behind every rare diagnosis is a person navigating school drop-offs, work meetings, grocery shopping and medical appointments.
It is about remembering that health systems built for averages will always struggle with outliers.
And it is about celebrating people like Tim who choose to transform adversity into awareness.
Making the Invisible Visible
There is something poetic about a runner dedicating each run to a disease most people have never heard of.
Each event becomes a conversation starter.
Each social media post becomes education.
Each kilometre becomes advocacy.
In a digital world saturated with noise, thoughtful design and intentional storytelling matter. As a Digital Creative Director, Tim understands that visibility is not accidental. It is crafted.
It is built through consistency.
It is built through repetition.
It is built by showing up, again and again, even when energy is low.
Especially when energy is low.
Looking in the Mirror
The image that stays with me is not the finish line. It is the mirror.
Tim’s quiet promise to himself, to be able to look in the mirror after twelve months and say he gave it his best.
That is a powerful measure of success.
Not remission.
Not medals.
Not metrics.
Effort. Integrity. Persistence.
For ten years, he has repeated that cycle.
On Rare Diseases Day, perhaps that is the invitation for all of us.
To look at the systems we are part of.
To ask whether we are doing our best.
To choose an attitude that builds inclusion, even when complexity feels overwhelming.
Because rare does not mean invisible.
And with leaders like Tim Fulton running towards awareness rather than away from difficulty, our community is stronger for it.
If you would like to follow Tim’s journey or learn more about Running Rare and Running for Resilience, now is the time.
Rare Diseases Day is one day on the calendar.
But for thousands of families, this is every day.
Let us make it count.
