Rare Voices Australia (RVA) has just launched a new report, Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases. The report highlights significant unmet need and a need for the health and disability sectors to collaborate to provide person-centred care. It is well worth a read.
The report has helped inform the development of a Rare Disease Action Plan, which is currently being finalised. It is the first nationally coordinated effort to address rare disease in Australia to drive systemic reform. As RVA says,”People are already fighting their rare disease each day, don’t make them have to fight the system as well.”
The Report and the Action Plan have been developed by the rare disease sector, for the rare disease sector. We would like to thank all those in the TSA Community who have helped and supported these initiatives.