The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and the impacts they have on those affected personally and their families.
February 28th 2017 marks the 10th annual World Rare Disease Day and the 8th year Australia has been involved in this initiative.
Continuing the momentum, Rare Disease Day 2017 puts the focus on how critical research is for rare disease. Research is critical because the inherent features of rare disease (lack of patient numbers) results in a clear lack of data, evidence and knowledge in rare disease. This has a direct negative impact on diagnosis, patient care, support, development of treatments and the reimbursement of these treatments (access).
There are more than 8000 known rare diseases affecting approximately two million Australians of which up to 400 000 are children. Most of these diseases are genetic, chronic and debilitating. It is telling that these figures are estimates only. Limited research and data, means that we do not even have a complete picture of what rare disease looks like in Australia; the prevalence and variation. Without measuring rare disease in Australia how can we hope to effectively respond to it? Research is critical for this.
People who are affected by rare diseases should be entitled to have the same treatment, access and quality of care as any other patient. Much of the Australian rare disease community advocate for a National Plan for Rare Disease, to prevent those with rare disease “falling through the cracks” of the Australian healthcare system. The health system is not a level playing field. That has seen the launch of the ‘Fair For Rare’ campaign. It aims to raise awareness about the unmet need in RD and highlight potential ways forward. It calls for more effective RD policy to transform patients’ lives. www.fairforrare.com.au .
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