The Start of Chapter Three

Dear Readers,

Firstly, I would like to thank you for subscribing to the Running Rare newsletter!

This week marks the start of Running Rare Chapter Three and 200 days until Rare Disease Day 2023. Unfortunately, due to COVID, I’m off to a less-than-desirable start and I haven’t started running yet. However, I am hopeful for a speedy recovery and that I might be able to start putting some kilometres and rare diseases on the board in the coming weeks. You can keep up-to-date on my progress, and check out the previous chapters, here.

Also, I’m excited to announce that I will collaborating with Rare Voices Australia as an official Ambassador this year. Rare Voices Australia (RVA) are the peak advocacy body for Rare Diseases in Australia and I am tremendously grateful to be a part of their ambassador program. You can learn more about the RVA Ambassador program here.

Like many rare diseases, Still’s doesn’t have a national or state advocacy or support group. In many ways we’re invisible to the system and policy makers — resulting in tremendous challenges associated with access to equitable treatment and care opportunities. So RVA’s work for the rare disease sector as a whole is critical. Since its inception ten years ago, RVA have been instrumental in the development of the first National Strategic Action Plan for Rare Diseases. This Action Plan has the potential to radically change the landscape of rare disease awareness, care and research in Australia. Living with a rare disease presents many challenges, but the Action Plan provides hope to the estimate two million Australians living with a rare disease that tomorrow may be a little brighter and a little easier.

Finally, I’d love to know your thoughts about this newsletter so far. This is something that is really new to me, so I’d love your honest feedback. If you have any questions, thoughts or topics you’d like me to cover please don’t hesitate to leave a comment below.

Have a great week,

Tim