John Alexander (Bennelong, Liberal Party) Share this | Link to this | Hansard source

I'm proud to announce that next month I will once again be embarking on a 100-kay walk around my electorate of Bennelong for charity. This year I'm partnering with Rare Voices Australia to raise money for rare-disease awareness, support and research. A rare disease is a life-threatening or chronically debilitating disorder or condition that is not common in the general population. While specific rare disease are by definition uncommon, there are, collectively, 6,000 to 8,000 identified rare diseases, with new disorders diagnosed frequently. Roughly six to eight per cent of the Australian population—well over 1.5 million—suffer from a rare disease. These diseases can have devastating consequences, but, sadly, our healthcare system is often inadequately resourced to diagnose and manage these conditions.

This is where Rare Voices Australia steps in. They are the peak national body for rare-disease advocacy. They work with key stakeholders including patients, key peak bodies, governments, researchers, clinicians and industry to promote rare disease diagnosis, access to treatments, data collection, coordinated care and access to services and coordinated research. I will be walking 100 kays around my electorate in three weeks over November, visiting almost every school, nursing home and shopping village in our community to raise funds for Rare Voices and the excellent work they do. I greatly look forward to my walk and hope to see as many people as possible joining me in supporting this important cause.