Policy

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.

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

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

Submissions

See a full list of RVA submissions to Government and Departmental enquiries below.

2021

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)

2020

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

2019

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)

2017

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)