As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) engages with several national and international connections. Building and maintaining these relationships ensures RVA remains actively involved in the latest developments in rare disease, both in Australia and globally. Additionally, one of the critical enablers of the Australian Government’s National Strategic Action Plan for Rare Diseases full implementation is ‘State, national and international partnerships’.
Please note: This is not an exhaustive list.
- Asia Pacific Alliance of Rare Diseases Organisations
- Australian Ethical Health Alliance
- Australian Multicultural Health Collaborative
- Clinical Centre of Expertise for Rare and Undiagnosed Diseases (Rare Care Centre)
- Disability Representative and Carer Organisations
- European Rare Diseases Research Alliance (ERDERA)
- EURORDIS: The European Organisation for Rare Diseases
- Genetic and Rare Diseases (GARD) Information Center
- Genomics Australia
- Global Nursing Network Rare Diseases
- Healthdirect Australia
- Health Technology Assessment International (HTAi)
- Health Technology Assessment Consumer Evidence and Engagement Unit
- Human Genetics Society of Australasia
- International Rare Diseases Research Consortium (IRDiRC)
- National Aboriginal Community Controlled Health Organisation (NACCHO)
- National Disability Insurance Agency
- National Rural Health Alliance
- Neurodegenerative, Palliative Care and Rare Diseases Advisory Group
- Orphanet
- Patient Voice Initiative
