Rare Voices Australia: April 2019 e-news
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Tino's Story 

Tino's story highlights the stigma around certain rare diseases, while reiterating the importance of international linkages in the rare disease space. It also showcases how technology and social media can play a pivotal role in connecting people. Read more.

A Word from our Chief Executive Officer

Hi everyone,

Well, the PM finally called the election… what does that mean for Australians living with rare disease? Arguably, whatever the outcome, we are in a fairly positive position. All major parties have recently committed to national rare disease policy, and RVA is working hard to keep all sides of Government updated on the developing work of the National Strategic Action Plan for Rare Diseases. We will be watching the outcome of the election with interest, not only to see who ultimately forms Government, but also to see which individual MPs and Senators are elected. There are many MPs and Senators who are rare disease champions, advocating for their constituents living with rare disease and who are supportive of RVA’s work. We wish them well for their election campaigns but more importantly, look forward to the end of caretaker mode and working with them again, to improve things for Australians living with rare disease.    

A huge thank you to everyone who has participated in our ‘Rare Disease and Access to Services’ survey. We had an amazing response – thank you! The McKell Institute is leading this work and we eagerly await the White Paper, which will provide much needed initial formal evidence regarding the Australian rare disease community and access to services (including a focus on the NDIS). This evidence will help to inform RVA advocacy in this area and inform the broader work of the National Strategic Action Plan.

Our final face-to-face Action Plan consultation will occur in Brisbane later this month. Thank you to everyone who has participated in our various Action Plan consultations. For those who have been unable to attend, RVA will circulate an online survey where you can provide feedback in the near future.

RVA is currently preparing for our Strategic Planning Day next month where the organisation will discuss our goals and aims for the next 3 to 5 years. Ahead of this, in the next few weeks, we will be reaching out to key stakeholders for their input and thoughts on the future work of RVA. Thanks in advance for your thoughtful input. For anyone who would like to provide their thoughts on this, please do not hesitate to contact me directly via email on:

Lastly, I would like to wish you all a safe and happy Easter – enjoy those chocolate eggs and hot cross buns!

Until next time,

Nicole Millis
Chief Executive Officer
Rare Voices Australia

2019 RVA stakeholder consultation meetings 

RVA has now held our National Strategic Action Plan for Rare Diseases stakeholder consultations in Sydney, Melbourne and Perth. Our final stop for this consultation phase is Brisbane on Monday, 29 April. All invites for our Brisbane stakeholder consultation have been sent. For any queries about the event, please email: 

We thank all stakeholders who have attended our consultations as they are a critical step towards the most effective rare disease policy and our work towards a National Rare Disease Framework. We also thank those who completed the McKell Institute's online survey. The
McKell Institute will be drafting a White Paper on Rare Disease and Access to Services to inform the National Strategic Action Plan for Rare Diseases. RVA will distribute this White Paper once it is finalised.

Online stakeholder consultation survey

For RVA partner organisation leaders who have been unable to attend any of the consultations in person, we will be distributing an online survey in the near future where you will be able to add your input.

Federal Budget 2019-20 and rare disease

Treasurer Josh Frydenberg announced the Morrison Government’s 2019-20 Federal Budget on 2 April. As a peak body, Rare Voices Australia (RVA) attended the Department of Health 2019-20 Federal Budget Briefing in Canberra. In the lead-up to and beyond the election, RVA will continue to work with all Parliamentarians including the Government, the Opposition and Independents, to address unmet rare disease policy needs within but also beyond the Health Portfolio (eg. the National Disability Insurance Scheme). RVA will continue our critical stakeholder consultation and development of the National Strategic Action Plan for Rare Diseases. Click here to read RVA's full statement.

HTA Consumer Evidence and Engagement Unit

A newly established HTA Consumer Evidence and Engagement Unit will be led by Dr Sally Wortley. The HTA Consumer Consultative Committee was established in 2017, with a key role to provide strategic advice and support to the principal Health Technology Assessment Committees and the Department of Health. The Committee work plan has included activities especially relating to consumer engagement and participation in Health Technology Assessment processes. A designated “Unit” to allow the development of structured projects of engagement with consumer and patient groups was established within the Department of Health. View the Committee’s web page here.

Public Consultation - PBS Process Improvements Stage 1

Earlier this month, the Department of Health held a PBS Process Improvements Webinar Information Forum to discuss the details of the Stage 1 PBS process improvements. They include the Positive Recommendation Pathways, a Medicine Status Website (see below for more information) and other process improvements. If you were unaware of/unable to attend the webinar, you can register here to gain access to it. The procedure guidance and relevant documents are now available for your comments and feedback until 29 April 2019. You can provide feedback via email ( or in hard copy - click here for postage details (be sure to scroll down).

New Medicine Status Website (Consumer View)

The Department of Health is proposing a Medicine Status Website (Consumer View), which is scheduled to be available from July 2019. The intent behind the Medicine Status Website is to incorporate a consumer-focused view to improve transparency on the progress of submissions through the PBS listing system. It is a key deliverable of the PBS Process Improvements project. The Medicine Status Website will be made available on the PBS website and will include explanatory notes. You can provide feedback via email ( or in hard copy - click here for postage details (be sure to scroll down).

WA Government - Sustainable Health Review Final Report

RVA welcomes the WA Government's release of its Sustainable Health Review (SHR) Final Report (click here to see the media release). It consists of eight enduring strategies and 30 recommendations for change in the WA health system and provides a blueprint for the future of health care in WA. RVA was pleased to see the reference to WA's Undiagnosed Diseases Program in the SHR Final Report as part of Strategy 8 – Innovate for sustainability (go to page 111 of the report for more).

Research Australia Pre-Election Statement Launch

Nicole Millis, RVA’s CEO, attended Research Australia’s Pre Election Statement Launch at Parliament House on 3 April. The Statement calls for six key reforms to benefit our health and medical research sector, including a consistent approach to rare disease. The development of this Statement had begun over a year ago at their Pre-Election Summit, for which RVA was an active participant. RVA congratulates Research Australia for including such a focus on rare disease. Research Australia’s Pre-Election Statement Launch was attended by a number of politicians and stakeholders. Click here to view the Pre Election Statement. 

2019 Rare Disease Day Tennathon Update

To mark Rare Disease Day, four incredible people - Katie, Hannah, Popey and Jamie - took to the Melbourne Park Tennis Centre with a mission: to play 60 consecutive hours of doubles tennis. We’re proud to report that not only did the team break the Guinness World Record, they exceeded their $20,000 fundraising target with all funds going to RVA. The final tally stands at an incredible $23,273! RVA sends a big thank you to everyone who was involved in this incredible event! From the players to their support crew, the umpires who donated their time, spectators, the media who covered the event and all of the generous people who donated whatever they could - every dollar will help to fight for fair for rare for Australia’s rare disease community.


Brisbane conference highlighting a rare disease
How often is a conference totally dedicated to a rare disease held? The Myasthenia Gravis Conference will be held by RVA Partner, Myasthenia Alliance Australia (MAA), on 3 August this year at the Princess Alexandra Hospital in Brisbane. This is an opportunity for people with various forms of myasthenia, carers, families and interested individuals to hear world-renowned neurologists speak, form networks, make new friends and share stories. New, up-to-date information presented by the neurologists can only be heard by attending the conference – it cannot yet be found on social media. Advice and answers to any questions you may have are available from the MAA chairperson, Susan, on freecall 1800 802 568. Read more at
Fabry Awareness Month - April
RVA Partner, Fabry Australia, officially registered Fabry Awareness Month with the Australian Government on the 12th October in 2012. Each year, during April, Fabry Australia aims to increase the awareness of Fabry Disease by increasing understanding about this rare condition and the implications of living with Fabry Disease as a patient and family. During Fabry Awareness Month in 2019, Fabry Australia welcomes your support and invites you to join them in sharing details about Fabry Disease with your family, friends and doctors. For more information and social media resources, click here. Fabry’s Be Rare. Be You. temporary tattoos are also available to purchase throughout Fabry Awareness Month. You can place your order here.
2019 AADAI Seminar
RVA Partner, the Australian Addison’s Disease Association Inc., is holding their 2019 AADAI Seminar: Getting to know your medications. This free event will take place in Sydney on Sat 25 May, 2019. People with Addison’s disease and adrenal insufficiency, along with their supporters, are invited. See the event flyer for more and for the registration details.
RVA partner news and how to become a partner
RVA partner organisations: don't forget you can send us your social media information online now so that RVA can cross-promote your organisation and its activities. Not an RVA partner yet? Joining is easy - as a small not-for-profit organisation, we rely on the support of our RVA partners to continue doing the work that we do. The more funds we have, the more we can do to fight for a fair go for those living with a rare disease. Individuals and organisations can sign-up to become an RVA partner here. In addition to advocacy, mentorship and education, RVA offers a number of other benefits to RVA partners including social media promotion, entry into our closed Facebook group which allows patient organisation leaders to share strategies and so on, rare disease policy support and more. For more information, please reach out to Sarah, our Stakeholder Engagement and Communications Officer via email to organise a phone call. Alternatively, become an RVA partner today.

Upcoming events

  • Australian Disorders of the Corpus Callosum (AusDoCC) events in May 2019:
  1. CONNECTIONS 2019: a conference for disorders of the corpus callosum, being held in Perth from May 10–12, 2019.
  2. AMAZING BRAINS CONNECT 2019:  attend presentations from three global leaders  in corpus callosum research, from the IRC5, on Saturday May 11, Perth.
If your organisation has an event coming up and would like it advertised in our newsletter, please email with the details. 

Submit to RVA's May 2019 edition of e-news

RVA encourages partner organisations and individuals to consider making a submission to a future RVA e-newsletter. If you have a rare disease meeting, event or announcement to share via RVA enews, please submit it to: Send a website link (preferable) or short paragraph with details such as: the title of event, date, cost, venue, details/contacts. The deadline for submissions for the May 2019 edition of RVA News is 8th May 2019.

Support Rare Voices Australia

Rare Voices Australia is a small but vibrant non-profit organisation that relies on the support of organisation partners and the community to be the unified voice of all Australians living with a rare disease. RVA's online partnership area enables individuals and organisations to join our cause. Click here for more details.
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