National Action for Rare Disease
Care and services for children living with rare conditions vary from country to country. Some places have more support, better care and laws in place that are models for improving the lives of children living with a rare disease. Some countries have National Rare Disease Plans that address things such as equitable access to care and treatment, programs for diagnosis, care coordination, research and engagement and support.
Australia has recognised this need and today, the Federal Health Minister, the Hon Greg Hunt MP, launched the National Strategic Action Plan for Rare Diseases. Rare Voices Australia has led the collaborative development of the Action Plan that has been developed by the rare disease sector, for the rare disease sector. The Action Plan works towards the best possible health and wellbeing outcomes for Australians living with a rare disease.