Glossary and Abbreviations


AdvocacySharing views and opinions with others to create positive change
AdvocatePublicly support or speak up for a cause
Centre of ExpertiseProvides specialist care for people with specific conditions or groups of conditions (for example, neuromuscular conditions or rare diseases)
Co-designA process and approach that involves all stakeholders working as equals in leadership, design, delivery, and decision-making
Cross-sectoralAcross more than one sector of the community or society
Multi-sectoralAcross multiple sectors of the community or society
Policy frameworkAn overarching structure that guides how policies and procedures will be developed, approved, communicated and reviewed
Rare disease sectorPeople living with a rare disease, their families and carers, and the health professionals, organisations and systems that care for them
StakeholderA person or organisation with an interest in something
Systemic changeChange that affects the systems involved in providing care and support to people living with a rare disease


ARDO-CoPAustralian Rare Disease Organisation Community of Practice
NDISNational Disability Insurance Scheme
NHMRCNational Health and Medical Research Council
PBACPharmaceutical Benefits Advisory Committee
RArESTRare Disease Awareness, Education, Support and Training
RVARare Voices Australia
SCHNSydney Children’s Hospitals Network
SMASpinal muscular atrophy
UNSWUniversity of NSW