Glossary
Term | Definition |
---|---|
Advocacy | Sharing views and opinions with others to create positive change |
Advocate | Publicly support or speak up for a cause |
Centre of Expertise | Provides specialist care for people with specific conditions or groups of conditions (for example, neuromuscular conditions or rare diseases) |
Chronic | Long-term |
Co-design | A process and approach that involves all stakeholders working as equals in leadership, design, delivery, and decision-making |
Cross-sectoral | Across more than one sector of the community or society |
Multi-sectoral | Across multiple sectors of the community or society |
Policy framework | An overarching structure that guides how policies and procedures will be developed, approved, communicated and reviewed |
Rare disease sector | People living with a rare disease, their families and carers, and the health professionals, organisations and systems that care for them |
Stakeholder | A person or organisation with an interest in something |
Systemic change | Change that affects the systems involved in providing care and support to people living with a rare disease |
Abbreviations
Abbreviations | Definition |
---|---|
ARDO-CoP | Australian Rare Disease Organisation Community of Practice |
NDIS | National Disability Insurance Scheme |
NHMRC | National Health and Medical Research Council |
PBAC | Pharmaceutical Benefits Advisory Committee |
RArEST | Rare Disease Awareness, Education, Support and Training |
RVA | Rare Voices Australia |
SCHN | Sydney Children’s Hospitals Network |
SMA | Spinal muscular atrophy |
UNSW | University of NSW |