Dialog Box


COVID-19: information and useful resources

As the COVID-19 pandemic continues, the team at Rare Voices Australia (RVA) shares our best wishes to those impacted personally and to the wider community during these uncertain times. You can read the full message that RVA distributed on 18 March 2020 here.

We encourage all people living with a rare disease to talk to their doctor about COVID-19 to understand the implications for their unique circumstances. RVA is continuing to monitor the situation closely and will act accordingly.


LATEST NEWS: Changes to Victoria's restrictions will occur from 11:59pm 27 October 2020. Click here to stay up-to-date with changes as they take place (26 October 2020).


Metropolitan Melbourne and regional Victoria's restrictions will be eased from 11:59pm 18 October 2020. Click here to read more (19 October 2020).


Metropolitan Melbourne has progressed to the second step of the roadmap to reopening. See the Victorian State Government's Second step to recovery and Roadmap to recovery webpages (28 September 2020)


On 6 September, Victorian Premier, Daniel Andrews, outlined Victoria's roadmap out of Melbourne lockdown and stage 3 COVID-19 restrictions. Click here for the latest information (6 September 2020)


Victoria has enacted a state of disaster to enforce COVID-19 restrictions - click here for more (2 August 2020) 


From 11.59pm on Sunday, August 2, face coverings will become mandatory for regional Victorians. Face coverings are already mandatory for Melbourne and Mitchelle Shire. Victoria has also suspended elective surgeries except for Category 1 and the most urgent Category 2 surgeries - click to read more (30 July 2020) 

Face coverings now mandatory for Melbourne and Mitchell Shire - read more (19 July 2020) 




Victoria's Chief Health Officer is now recommending that people in Melbourne and Mitchell Shire, under stage 3 restrictions, wear face masks when outside the home if it is difficult to keep 1.5 metres away from others. Click here for more information (13/7/2020)


Government announces the roadmap to a COVID-19 safe Australia in three stages (8/5/2020)


Click here to read the detailed plan of the steps and here for more information.


COVIDSafe app released (27/4/2020)


The Australian Government has released its COVIDSafe app for smartphones. The app is available to download for free via the Apple or Google app stores. Its purpose is to identify people who may have come into contact with someone who has COVID-19 so that they can be advised to take measures to help stop the spread of the virus or to get tested. Read more here.


Updates and official advice from the Australian Government

Please see the Australian Government’s Department of Health Coronavirus (COVID-19) Health Alert website for the latest information.

The Government has identified those with chronic medical conditions and compromised immune systems as being among those most at risk.


An advisory group has been established by the Morrison Government to guide development and implementation of a response plan focusing on the unique health needs of people with disability during the coronavirus pandemic. Click here to read more. 


The Government released its Management and Operation Plan for People with Disability in April 2020. 

National Coronavirus Helpline

For information on the coronavirus disease (COVID-19), call the Australian Government's National Coronavirus Helpline on 1800 020 080.


COVID-19 App and WhatsApp feature


From 29 March, a new app is available and allows users to navigate the latest advice and information about COVID-19 in real-time. Coronavirus Australia, is available from Apple App Store (Apple devices) and Google Play (Android devices). The Government has also launched a new WhatsApp feature.


COVID-19 Symptom Checker

You can use Healthdirect Australia’s Symptom Checker if your circumstance is not urgent and to find out if you need to seek medical help. See Healthdirect Australia's website for more information about COVID-19.

Other RVA advocacy updates


RVA advocacy update (4/5/2020) 


Flexible school attendance requirements 


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. 


RVA advocacy update (8/4/2020)

Critical care guidelines for Australians living with a rare disease


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. 


On 26 February 2020, the Federal Minister for Health, the Hon Greg Hunt MP, formally launched the National Strategic Action Plan for Rare Diseases (the Action Plan). RVA led the collaborative development of the Action Plan with its vision being to achieve the best possible health and wellbeing outcomes for Australians living with a rare disease. The priorities underlying this policy framework, including awareness and education, care and support and research and data, are all highly relevant to Australia’s response to the COVID-19 pandemic. RVA urges policy makers and authorities to specifically consider people living with a rare disease during the COVID-19 crisis, and to take action to ensure their individual clinical needs are met. 


RVA has 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.

Priority testing and turnaround times (23/3/2020)


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.


Click here to read the responses RVA has received to date. 


Life Saving Drugs Program (LSDP)


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.

Updates to be aware of


20/04/2020 - Medicines Australia 


During the current COVID-19 pandemic, Medicines Australia acknowledges the Government’s decision to temporarily allow for substitution of dose strengths or forms of medicines by a pharmacist without reference to the patient’s doctor only if the originally prescribed medicine is in serious shortage (as deemed by the TGA) at the time. This should only be implemented within strict protocols released by the TGA.


05/04/2020 - NDIS: priority home delivery services


From Monday 6 April, NDIS participants can purchase grocery items online to be delivered to their home. Click here to read more.


28/03/2020 — medicine supplies in Australia

Medicines Australia (MA) is advising that Australia has sufficient supplies of medicines and are strongly discouraging the stockpiling or panic buying of medicines. It’s important that people, including those living with a rare disease, only obtain the medicines they immediately require.

MA has encouraged pharmacists and GPs to help manage the supply of medicines and support the Government’s purchasing limits on selected medicines. Useful links for more information:

COVID-19 limits on dispensing and sales at pharmacies

Limits on dispensing and sales of prescription and over-the-counter medicines

TGA cautions against over-buying medicines

TGA response to Covid-19


There are certain medicines deemed critical by the Therapeutic Goods Administration (TGA) and MA. If there was no availability or if there was an interruption to treatment, this could result in significant health impacts. The other scenario being anticipated is an increased demand of some medicines due to COVID-19. See this list, published on the TGA website — other medicines may be added over time.

25/03/2020 — NDIS

Here is a snapshot of the COVID-19 updates as of 25/3 from the National Disability Insurance Agency (NDIA):

- If a participant has a scheduled plan review, the NDIA will contact them by phone or email to undertake their review. As part of this plan review process, a participant can discuss having a new plan in place for up to 24 months.

- The NDIA will be making changes to NDIS systems over the weekend to make sure participants have the funding they need during the COVID-19 pandemic.

- To ensure participant plans don’t end, on the day a plan is due to expire, it will be automatically be extended by 365 days. Participants who have plans that expire soon, do not need to do anything to have their plans automatically extended by 365 days.


Click here for full details.

21/03/2020 — NDIS

Rare Voices Australia welcomes new measures announced to support NDIS participants and providers through COVID-19. Click here to read the Hon Stuart Robert MP’s media release.

19/03/2020 — Access to medicines

Medicines Australia is advising that there are no anticipated shortages of medicines due to COVID-19. This means there is no need for anyone, including those living with a rare disease, to stock up with more than their usual supply of medicines. Click here to read more.

Other useful links and information

People with Disability Australia

Australian Department of Health guidance and announcements to be aware of:

Identifying the symptoms

Pharmacy deliveries to COVID- affected and vulnerable people

Guidance on isolation

Advice on public gatherings and visits

COVID-19 related scams

The Australian Government agency, Stay Smart Online has issued a warning related to COVID-19 scam messages. Click here for more information.

World Health Organization: Rolling Updates on COVID-19


On 14 April 2020, the World Health Organization released new COVID-19 Strategy resources. The overarching goal is for all countries to control the pandemic by slowing down the transmission and reducing mortality associated with COVID 19.


24/7 mental health support


If COVID-19 and its impacts are making you feel anxious or worried, there are a number of support organisations available 24/7 that can help with providing mental health support. See Healthdirect Australia's below image for health services.



































Education resources 


For a range of education resources, see the Syndromes Without a Name (SWAN) Australia website.


If you're finding it difficult to explain COVID-19 to your kids, SA Health has developed an online booklet for young children that explains what COVID-19 is and how we can stop it from spreading. Download the booklet here: https://bit.ly/3aKRiPd