Category: COVID Advocacy Updates

RVA has reached out to all state education ministers and Chief Health Officers regarding the need for flexible school attendance requirements for the rare disease community. Here is a template of the letter that has been sent. We encourage you to use this letter in your ongoing individual advocacy. 

Responses received to date:    

Western Australia – Dr Andrew Robertson, Chief Health Officer

Western Australia – Sue Ellery MLC, Minister for Education and Training 

South Australia – Ben Temperly, Executive Director, System Performance 

Tasmania – Jeremy Rockliff MP, Deputy Premier / Minister for Education and Training 

New South Wales – COVID-19 Ministerial team 

New South Wales – Hon Sarah Mitchell MLC, Minister for Education and Early Childhood Learning

Northern Territory – Emma Deane, Acting General Manager Quality School Systems and Support 

Queensland – Office of Hon Grace Grace MP, Minister for Education and Minister for Industrial Relations

Queensland – CHO COVID-19 Correspondence team 

ACT – Yvette Berry MLA, Minister for Education and Early Childhood Development

Victoria – the Hon James Merlino MP,  Deputy Premier, Minister for Education, Minister for the Coordination of Education

On 8 April 2020, RVA released this statement, which has been developed in conjunction with our Scientific and Medical Advisory Committee following the COVID-19 press release issued by EURORDIS on 31 March 2020.  RVA distributed the statement publicly and reached out to our state government contacts as well as all state Chief Health Officers, expressing our interest in facilitating the development of any COVID-19 related work that will impact Australians living with a rare disease, such as critical care guidelines.

Responses received to date:   

Western Australia –  Dr Andrew Robertson, Chief Health Officer

New South Wales – COVID-19 Ministerial team 

Victoria – Department of Health & Human Services 

RVA has reached out to all state Health Ministers and Chief Health Officers to request that they prioritise COVID-19 testing and turnaround times for people living with a rare disease who are displaying symptoms. Here is a template of the letter that has been sent. We encourage you to use this letter in your ongoing individual advocacy. 

Responses received to date: 

Queensland – Dr Jeannette Young PSM, Chief Health Officer, Deputy Director-General  

Tasmania – Hon Sarah Courtney MP, Minister for Health 

Western Australia –  Dr Andrew Robertson, Chief Health Officer

South Australia – Stephen Wade, Minister for Health and Wellbeing

Victoria – Jenny Mikakos MP’s office, former Minister for Health, Minister for Ambulance Services 

RVA is liaising with our RVA Partners that represent members in their community who access the LSDP to ascertain the full potential impacts of COVID-19 on the LSDP. We will communicate any updates as we have them. RVA is aware that the consumer nominee on the LSDP Expert Panel has pro-actively been communicating with the LSDP regarding potential impacts and has put forward initial recommendations.