Melissa Parke MP delivered a speech in Parliament on International Rare Disease Day (29th February 2016) on the need for priority focus for a Rare Diseases Policy. Read the speech below.
Ms Parke (4:09pm) — Today is international Rare Disease Day. In its ninth year, the theme and focus for 2016 is: ‘Patient voice’—recognising the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.
While rare diseases affect a considerable proportion of the population in aggregate, with nearly 7,000 rare diseases identified, it remains a relatively unknown health issue.
Last Wednesday, I had the pleasure of attending a barbecue hosted by Rare Voices Australia, where Professor Ravi Savarirayan of the Murdoch Children’s Research Institute, an international expert on rare genetic conditions, emphasised that rare diseases are in fact not all that rare. Conservative estimates indicate that six to eight per cent of Australians are affected by a rare disease. We heard from Samantha Prior, as well as Samantha Cosgrove and Tracey Nelson, the mothers of ‘cowboys’, Beau and Kalten, who have the ultrarare genetic condition Morquio A. It is clear that medical advances are assisting to improve their children’s futures.
While 80 per cent of rare diseases are genetic, the diagnosis of a rare disease is often delayed due to the complex nature of these rare diseases. As I have said in this place before, this should be a public health policy priority at both national and international levels. Building and improving access and the sharing of resources will encourage the development of policies, service planning, clinical guidelines and research, which will in turn improve diagnosis, appropriate care and treatment for thousands of Australians. I thank Rare Voices Australia for the important work they do and urge all members to show their support for people impacted by rare diseases.