The National Recommendations for Rare Disease health Care are eight practical recommendations, with embedded resources and educational courses, developed by a multi-disciplinary team including GPs. GPs are the healthcare professionals most often responsible for identifying people with a likely rare disease and co-ordinating whole of life interdisciplinary care and support for patients and their families. The Recommendations were developed as part of the Rare Disease Awareness, Education, Support and Training (RArEST) Project, a collaboration between Rare Voices Australia, the national peak body for people living with a rare disease, and three universities.
The National Recommendations for Rare Disease Health Care
Taking Action Together toolkit showcases how the Australian rare disease sector has worked to advocate for systemic change for people living with a rare disease. The toolkit comprises case studies and describes four key approaches for effective systemic advocacy as well as useful tools to apply these approaches.
Taking Action Together toolkit
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