Policy
In addition to the National Strategic Action Plan for Rare Diseases, Rare Voices Australia (RVA) has been involved in the following policy development to date. You can view RVA’s disability-related Submissions and resources on this dedicated web page.
2024
National Disability Insurance Scheme Pricing and Funding Arrangements (PDF)
Department of Social Services National Carer Strategy Consultation (PDF)
NDIS Provider and Worker Registration Taskforce (PDF)
2023
Government Consultation on the Use of Genetic Testing Results in Life Insurance Underwriting (PDF)
2023 Status Report: Implementing the National Strategic Action Plan for Rare Diseases (PDF)
National Strategy for Australia’s Rare Metabolic Diseases Workforce (PDF)
Health Technology Assessment Policy and Methods Review – Consultation 1
Future Governance and Administration of Australian Health and Medical Research Funding (PDF)
National Disability Insurance Scheme Independent Review (PDF)
2022
2020
RVA Position Statement – Government response to the Tune Review of the NDIS Act 2013 (PDF)
COVID-19 pandemic: critical care guidelines for Australians living with a rare disease (PDF)
2019
Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases (PDF)
2018
Asia-Pacific Economic Cooperation Rare Disease Action Plan (PDF)
2017
Rare disease registries: a call to action
Call for a National Rare Disease Framework: 6 Strategic Priorities (PDF)
2016
Australian Government response to the Post-market Review of the Life Saving Drugs Program (PDF)
International Joint Recommendations to Address Specific Needs of Undiagnosed Rare Disease Patients (PDF)
2014 – 2015
Communique (PDF)
Post-market review of the Life Savings Drugs Programme June 2014 – June 2015 (PDF)
2014
Submissions
See a full list of RVA submissions to Government and Departmental enquiries below.
2023
Pharmaceutical Benefits Scheme (PBS) Post-market Review (PMR) Framework (PDF)
Capability and Culture of the National Disability Insurance Agency (PDF)
The Special Commission of Inquiry into Healthcare Funding (PDF)
2022
Capability and Culture of the National Disability Insurance Scheme (PDF)
Conversations for Change Consultation Survey (PDF)
National Medicines Policy (NMP) – Consultation on the Revised NMP (PDF)
Consultation Draft: National Medicines Policy (PDF)
2021
National Medicines Policy Review (PDF)
Therapeutic Goods Administration Consultation: Repurposing of prescription medicines (PDF)
Mitochondrial Donation in Australia (PDF)
Paediatric Palliative Care National Action Plan Project Consumers Consultation – Discussion Paper (PDF)
2020
2019
Draft National CQR Strategy May 2019 – Attachment A (PDF)
Draft National CQR Strategy May 2019 – Attachment B (PDF)
2018
2017
Funding for Research into Cancers with Low Survival Rates: Submission to the Senate Select Committee (PDF)
National Health Genomics Policy Framework (PDF)