Rare diseases are a public health priority. There are approximately 190,000 Western Australians living with a rare disease, including 63,000 children. Rare diseases are commonly life-threatening or chronically debilitating, cannot be prevented, are incurable, have no effective treatments and are associated with significant pain and suffering. People living with rare diseases are likely to have multi-systemic dysfunction and hence require complex health care and access to a wide range of health services across tertiary, secondary and primary sectors.
This strategic framework draws together a range of initiatives for rare diseases that WA Health intends to deliver in 2015-2018. It provides coordination, coherence and a clear direction for activities that WA Health will undertake in the area of rare diseases. As such it is an opportunity to benefit the health and wellbeing of Western Australians living with rare diseases, their carers and families, and to support clinicians, researchers, policy-makers and WA Health to respond effectively to rare diseases.