Policy and Submissions

In addition to the Australian Government’s National Strategic Action Plan for Rare Diseases, Rare Voices Australia (RVA) has lodged the following Submissions and been involved in the policy development listed below. You can view RVA’s disability-related Submissions and resources on this dedicated web page.

2026

Senate Community Affairs Legislation Committee Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 (PDF)

Senate Standing Committees on Community Affairs Inquiry Into Epilepsy in Australia (PDF)

Framework for consumer engagement in HTA (PDF)

Draft Statement on Consumer and Community Involvement in Health and Medical Research (PDF)

Possible Association to Horizon Europe: Request for Information (PDF)

National Disability Insurance Scheme (NDIS) Improving Service Agreements (PDF)

National Disability Insurance Scheme (NDIS) Evidence Advisory Committee – Positive Behaviour Support (PDF)

Medical Research Future Fund – Missions Program Evaluation (PDF)

National Disability Insurance Scheme (NDIS) New Framework Planning – Department of Health, Disability and Ageing (PDF)

National Disability Insurance Scheme (NDIS) 2025-2026 Annual Pricing Review (PDF)

2025

NDIS Evidence Advisory Committee September 2025 Consultation (PDF)

Review of the Disability Discrimination Act 1992 – Attorney-General’s Department (PDF)

Standing Committee on Health, Aged Care and Disability: Inquiry into the Thriving Kids Initiative (PDF)

Neurodegenerative, Palliative Care and Rare Diseases Advisory Group

Australia’s Top 10 Rare Disease Research Priorities (PDF)

National Health Genomics Policy Framework and Implementation Plan 2026-2030 – Consultation Draft (PDF)

Department of Social Services Consultation – National Disability Insurance Scheme (NDIS) Supports Rules (PDF)

Registration of NDIS Participants Who Self-Direct Their Supports – NDIS Quality and Safeguards Commission (PDF)

Communique: Long-Term Strategic Guidance of Australia’s Digital Health and Health Data Infrastructure

Guidelines for Community Involvement in Genomic Research

Metabolic Medicine Developments

National Health and Medical Research Strategy

National Statement on Ethical Conduct in Human Research 2025

2025-26 Pre-Budget Submission

Tasmanian Government 20-Year Preventative Health Strategy Consultation

Disability Aviation Standards Co-Design Online Workshops

2024

Genetic Discrimination Life Insurance Treasury Consultation Collective Response

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)

Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability: Response to Recommendations (PDF)

Joint Standing Committee on the National Disability Insurance Scheme: NDIS Participant Experience in Rural, Regional and Remote Australia (PDF)

Community Affairs Legislation Committee Inquiry on the NDIS Amendment – (Getting the NDIS Back on Track No. 1) Bill 2024 (PDF)

Draft Lists of NDIS Supports – Department of Social Services (PDF)

Response to the Draft National Carer Strategy – Department of Social Services (PDF)

National Carer Strategy Consultation – Department of Social Services (PDF)

Foundational Supports (General Supports) – Department of Social Services (PDF)

Consultation on Proposed Changes to NDIS Act (Bill No.2) – Quality and Safeguarding Amendments – NDIS Quality and Safeguards Commission (PDF)

2023

Government Consultation on the Use of Genetic Testing Results in Life Insurance Underwriting (PDF)

Recommendations for a National Approach to Rare Disease Data: Findings from an Audit of Australian Rare Disease Registries (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)

Australian Commission on Safety and Quality in Health Care’s Consultation on the Framework for Australian clinical quality registries Second Edition (PDF)

Pharmaceutical Benefits Scheme (PBS) Post-market Review (PMR) Framework (PDF)

Capability and Culture of the National Disability Insurance Agency (PDF)

Response template for the proposed Interprofessional Collaborative Practice Statement of Intent public consultation (PDF)

The Special Commission of Inquiry into Healthcare Funding (PDF)

2022

Rare Metabolic Disease White Paper (PDF)

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)

Therapeutic Goods Administration (TGA) consultation on the adoption of international scientific guidelines in Australia: European Medicines Agency (EMA) Guideline on registry-based studies (PDF)

Australian Commission on Safety and Quality in Health Care’s National One Stop Shop single national Site-Specific Assessment (SSA) minimum core elements (PDF)

Review of discount rate in the Pharmaceutical Benefits Advisory Committee (PBAC) guidelines consultation (PDF)

Second Submission: Joint Standing Committee on the National Disability Insurance Scheme (NDIS) — Current Scheme Implementation and Forecasting for the NDIS (PDF)

Consultation Draft: National Medicines Policy (PDF)

Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia (PDF)

2021

Australian Commission on Safety and Quality in Health Care’s National One Stop Shop and the National Clinical Trials Front Door Proposal (PDF)

Guiding Principles: Ensuring Culturally Safe Health Genomics in Partnership with Aboriginal and Torres Strait Islander Peoples (PDF)

Interim Submission: Joint Standing Committee on the National Disability Insurance Scheme (NDIS) — Current Scheme Implementation and Forecasting for the NDIS (PDF)

National Medicines Policy Review (PDF)

Joint Standing Committee on the National Disability Insurance Scheme Parliamentary Inquiry into Independent Assessments (PDF)

Therapeutic Goods Administration Consultation: Repurposing of prescription medicines (PDF)

National Disability Insurance Agency public consultation: access and eligibility policy with independent assessments (PDF)

Mitochondrial Donation in Australia (PDF)

Senate Community Affairs References Committee Inquiry into the Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 (PDF)

Paediatric Palliative Care National Action Plan Project Consumers Consultation – Discussion Paper (PDF)

Current Scheme Implementation and Forecasting for the NDIS – Joint Standing Committee on the NDIS (PDF)

2020

Parliamentary Inquiry into approval processes for new drugs and novel medical technologies in Australia

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)

Australian Government Policy Framework: National Strategic Action Plan for Rare Diseases

2019

Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases (PDF)

PBS Process Improvements Stage 1 – Public Consultation Submission: New Medicine Status Website (Consumer View) (PDF)

Draft National CQR Strategy May 2019 – Attachment A (PDF)

Draft National CQR Strategy May 2019 – Attachment B (PDF)

2018

Medical Research Future Fund consultation to inform the second Australian Medical Research and Innovation Priorities 2018-2020 (PDF)

Submission to the Senate Inquiry regarding the Therapeutic Goods Amendment (2017 Measures No 1) Bill 2017 (PDF)

Submission to the Medical Research Future Fund consultation to inform the second Australian Medical Research and Innovation Priorities 2018-2020 (PDF)

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)

Funding for Research into Cancers with Low Survival Rates: Submission to the Senate Select Committee (PDF)

Submission to the Consultation: provisional approval pathway for prescription medicines – proposed registration process and post-market requirements (PDF)

National Health Genomics Policy Framework (PDF)

2016

Submission to the Senate Inquiry regarding the Therapeutic Goods Amendment (2016 Measures No. 1) Bill 2016 (PDF)

PBAC Guidelines Review Public Consultation (PDF)

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)

2015

Communique (PDF)

Post-market review of the Life Savings Drugs Programme June 2014 – June 2015 (PDF)

2014

Funding Rare Disease Therapies in Australia – Ensuring equitable access to health care for all Australians (PDF)