In 2018, the Australian Government commissioned Rare Voices Australia, the peak body for Australian’s living with a rare disease, with the task to collaboratively develop a National Strategic Action Plan for Rare Diseases.

In 2020 the Action Plan was released and a few months later I began Running Rare — a personal challenge inspired by a desire to play a part in advocating for the rare disease community during this critical implementation period.

I am not a gifted runner. In fact, when I first started Running Rare I was recovering from my second Still’s Disease flare and I could barely manage to run around the block. So attempting to run 100km in 200 days seemed audacious, to say the least. But I knew I needed to get moving again and the concept of using running as a catalyst to raise awareness for the rare disease community continues to propel me to this day. I can’t run remarkable distances, but I can keep showing up. There are lots of things in life we can’t control, but we do get to choose our attitude.

I never imagined that I would complete that initial goal of running 100km in 200 days, but with remarkable support and encouragement, you helped carry me across that finishing line.

This year I set my sights on another audacious goal — developing a platform to share not only my journey but also to share the stories of the rare disease community. That vision has now become a reality and I want to thank you for visiting. Regardless of whether you live with a rare disease, I hope that you might be encouraged and uplifted.

Yours sincerely,
Timothy Fulton