RVA Poster Presentation for HGSA Virtual Conference 2020

Rare Voices Australia (RVA) attended the Human Genetics Society of Australasia’s (HGSA) Virtual Conference on 24 and 25 November 2020. RVA was pleased to present our poster, The National Strategic Action Plan for Rare Diseases: A Collaborative Multi-stakeholder Approach to Effective Rare Disease Policy Reform. Click here to view RVA’s poster.

Hope on the Horizon

Imagine your child is showing symptoms that confound doctors. 

You see expert after expert, getting test after test. 

Perhaps you’re even scoffed at along the way, however, you persevere because your instincts as a parent are screaming at you that something is not right with your child and you know early interventions produce the best outcomes.

Rare Voices Australia’s (RVA) CEO, Nicole Millis, and Deputy Chair and Director, Kane Blackman, were interviewed by The West Australian.

Click here to read the full article.

Federal Budget 2020-21 and Rare Disease

On Tuesday evening, Treasurer Josh Frydenberg, announced the Morrison Government’s 2020-21 Federal Budget. As the peak body for Australians living with a rare disease, Rare Voices Australia (RVA) attended the Department of Health’s Portfolio Briefing webinar presentation and Q&A with the Hon Greg Hunt MP (Minister for Health); Senator the Hon Richard Colbeck (Minister for Aged Care and Senior Australians, Minister for Youth and Sport); and the Hon Mark Coulton MP (Minister for Regional Health, Regional Communications and Local Government). The session was facilitated by Professor Brendan Murphy, the Secretary of the Department of Health.

RVA has highlighted areas of the Federal Budget 2020-21 that we believe are most relevant to the rare disease sector. Click here to read RVA’s full statement.

Amplifying the Patient Voice in Rare Disease Access

Rare disease patients are organising like never before, turning up the publicity volume and becoming ever more active in driving cures in the lab and even the boardroom.

As a person living with a rare disease and a professional in healthcare communications, I occasionally have moments of disconnect. Such as when I began this article.  

Let me explain. In Thinking Fast and Slow, a mental model proposed by Daniel Kahneman, system 1 thinking is characterised by ‘emotive, instinctive’ thought patterns, while system 2 thinking utilises a deliberate, rational frame of mind. We spend more time in system 1 thinking than most of us care to admit. 

Click here to read the full article.

RVA Position Statement: Government Response to the Tune Review of the NDIS Act 2013

On 28 August 2020, the Federal Government announced its response to the review of the National Disability Insurance Scheme (NDIS) Act 2013 conducted by former senior public servant, David Tune. The Tune Review made 29 recommendations to improve the way the NDIS operates. Rare Voices Australia (RVA) has reviewed the information the Government released on 28 August, including its formal response. RVA has released a Position Statement addressing the Government’s response following consultation with our RVA Partner organisations via our closed Facebook group — this approach was undertaken due to the time critical nature of this issue.

Click here to read RVA’s Position Statement.

RVA is in the process of writing formal letters to the Minister for the NDIS, Hon Stuart Robert MP, and the Shadow Minister for the NDIS, Hon Bill Shorten MP. These letters will address aspects of the Government’s response that RVA welcomes and areas that are concerning for the rare disease community. RVA has successfully communicated previously with both Mr Robert’s and Mr Shorten’s office regarding the NDIS and rare diseases and we look forward to continuing these ongoing discussions moving forward.

Parliamentary Inquiry Support Materials

As you may be aware, the House of Representatives Standing Committee on Health, Aged Care and Sport (the Committee), Chaired by Trent Zimmermann MP and Dr Mike Freelander MP, has commenced a Parliamentary Inquiry into new drugs and novel medical technologies. The inquiry will include a particular focus on access to the treatment of rare diseases and conditions where there is high and unmet clinical need. The Committee is inviting organisations and individuals to make a submission addressing the terms of reference by Tuesday, 13 October 2020.

Guided by the National Strategic Action Plan for Rare Diseases (the Action Plan), Rare Voices Australia (RVA) has put together a suite of support materials to highlight the recommendations that have strong support for implementation in relation to the Terms of Reference (TOR) of the inquiry. We’ve included a guide for each TOR to highlight some of the common issues for the rare disease community – this is not an exhaustive list. These guides include excerpts from the Action Plan that cover recommendations in relation to the relevant TOR. Click here to access the guide for each TOR.

RVA Partners are encouraged to reach out to Louise Healy, RVA’s Stakeholder Engagement and Education Officer for support on 0455 053 877 or via email: education@rarevoices.com.au