On Tuesday 9 May, the Hon Dr Jim Chalmers MP (Treasurer of Australia) delivered the Albanese Government’s 2023-24 Federal Budget. Overall Australian Government spending on health, aged care and sport in 2023-24 is $137.6 billion.
As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) attended the Department of Health and Aged Care’s Portfolio Briefing Webinar Presentation and Q&A on Wednesday 10 May. The webinar included the Hon Mark Butler MP (Minister for Health and Aged Care); the Hon Ged Kearney MP (Assistant Minister for Health and Aged Care); the Hon Emma McBride MP (Assistant Minister for Mental Health and Suicide Prevention and Assistant Minister for Rural and Regional Health); the Hon Anika Wells MP (Minister for Aged Care and Minister for Sport); and Senator the Hon Malarndirri McCarthy (Assistant Minister for Indigenous Australians and Assistant Minister for Indigenous Health). The session was facilitated by Prof Brendan Murphy AC, Secretary of the Department of Health and Aged Care.
RVA Statement: 2023-24 Federal Budget
RVA has highlighted some areas of the Federal Budget we believe are most relevant to the estimated two million Australians living with a rare disease and the rare disease sector. RVA’s work is non-disease specific and is based on the commonalities of rare disease. Our advocacy focuses on rare disease policy, processes and systems. We advocate for all rare disease communities and remain committed to ongoing work with all governments to progress the systemic implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases.
Equitable access to health technology is a key priority of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan). Rare Voices Australia (RVA) and the rare disease sector have been actively advocating for reform that makes health technology assessment (HTA) for rare disease therapies more fit-for-purpose. Most recently, as the national peak body for Australians living with a rare disease, RVA has been advocating to ensure that consumers lead the co-design of an enhanced consumer engagement process and met with the HTA Policy and Methods Review Reference Committee to discuss this issue. You can read the communique that was released following two meetings, including the meeting with RVA.
Health Technology Assessment Policy and Methods Review
The HTA Policy and Methods Review (the HTA Review) is being conducted by the Department of Health and Aged Care and is an opportunity to ensure Australia’s HTA policy is constantly improving under evaluation. Click here to read more about HTA; the Terms of Reference (TOR) for the HTA Review; RVA’s reflections on the TOR; and more.
Rare Disease Sector Webinar: Health Technology Assessment Policy and Methods Review
As part of RVA’s ongoing HTA advocacy, we encourage rare disease organisations/groups to participate in the HTA Review in ways that align with their capacity. To support this, we are running a webinar.
All are welcome to register. The webinar will consist of presentations and a Q&A session. The presentations will be recorded and uploaded to RVA’s Online Education Portal. The Q&A session will only be available to those attending live.
Submit Your Questions
You are welcome to submit your questions for consideration ahead of the webinar. Please email all questions to: [email protected]
Note: the Q&A session will only be available to those attending live.
The Webinar Will Cover:
What is HTA?
What is the HTA Review and why is it being done?
How can consumers get involved in the HTA Review?
The information, evidence and input the HTA Policy and Methods Review Reference Committee are seeking from consumers
The enhanced consumer engagement process and an update on work already underway
HTA and rare disease therapies
Key messages aligned with the Action Plan
Presenters
Ann Single – HTA Policy and Methods Review Reference Committee
Ann Single is the Coordinator and an Advisory Committee Member of the Patient Voice Initiative (Australia) and internationally chairs the Health Technology Assessment international (HTAi) Patient and Citizen Involvement Interest Group (known as PCIG) whose 300 multi-stakeholder members in 43 countries work to improve patient involvement in health technology assessment (HTA). Her interest in patient knowledge and how decisions are made about what is funded in health systems began when she directed patient involvement and communication in Scotland’s first HTA body and later established involvement processes for the Scottish Medicines Consortium. She is co-editor of the first book in the field, Patient Involvement in Health Technology Assessment (2017). Ann recently accepted an invitation to serve as a patient representative on the Reference Committee for the Australian Government’s HTA Policy and Methods Review. She was a co-chair of the HTAi Annual Meeting scientific program committee in 2022 and will be a member of this and the Local Organising Committee for HTAi’s Annual Meeting in Adelaide in June 2023.
Jo Watson – Chair, HTA Consumer Consultative Committee
Jo Watson is Deputy Chair of the Pharmaceutical Benefits Advisory Committee (PBAC) and has been a consumer nominee on the PBAC since 2013. In 2021 she was appointed the Deputy Chair of the MBS Review Advisory Committee (MRAC) and is also Deputy Chair of the Board of Consumers Health Forum (CHF), the peak national health consumer organisation in Australia. Jo’s areas of interest include developing pathways for patient engagement in HTA, public health responses to infectious disease outbreaks, and capacity building for patient representatives and advocates. Jo has contributed to health policy reform and analysis in the areas of Communicable Diseases, the National Medicines Policy and PBS programs. Jo has been the Chair of the HTA Consumer Consultative Committee within the Office of Health Technology Assessment in the Department of Health since it was established in February 2017.
Nicole Millis – Chief Executive Officer, RVA
A qualified social worker, Nicole has both personal and professional experience in the rare disease sector. Nicole has engaged in rare disease advocacy since 2008 and has extensive experience regarding access to treatments. Since 2018, Nicole has held the role of consumer nominee on the Life Saving Drugs Program Expert Panel. Under Nicole’s guidance, RVA led the collaborative development of the National Strategic Action Plan for Rare Diseases, the first nationally coordinated effort to address rare diseases in Australia.
Host/Q&A Session Moderator
Louise Healy – Education and Advocacy Manager, RVA
Louise has extensive experience working as a consultant and coach in the corporate sector and has post graduate qualifications in psychology. Her connection with rare conditions began when her first child was born with a rare metabolic disorder. Louise has been involved in rare disease support and advocacy for over 10 years and she is the current Vice President of the Metabolic Dietary Disorders Association (MDDA). She has led successful advocacy campaigns for access to medicines and support programs for people with rare disorders of protein metabolism. Louise is a previous RVA Board member, current member of the Queensland Genomics Community Advisory Board and a founding board member of the Global Association for PKU.
RVA Partner Organisations/Groups
RVA offers mentoring for RVA Partner organisations/groups that wish to access customised guidance and support: [email protected]
RVA’s Chief Executive Officer, Nicole Millis, mentioned the Strategy in her speech at RVA’s Rare Disease Day Parliamentary Event on 8 March 2023 and highlighted the importance of sustainable systems and workforce for rare disease more broadly.
Special thanks to the Project Steering Committee, RVA Partner organisation leaders and other experts in the specialist metabolic workforce for their guidance in co-developing the goals, recommendations and priority actions for the Strategy.
Why Is This Work Important?
Australia’s first nationally coordinated effort to address rare diseases—the National Strategic Action Plan for Rare Diseases (the Action Plan)3—called for the development of a national rare disease workforce strategy that responds to current and future demands, including the impact of genomics. ‘Sustainable systems and workforce’ is one of three foundation principles of the Action Plan.
The Strategy is an initial step to progress the development of a national rare disease workforce strategy. As the national peak body for Australians living with a rare disease, RVA is leading the collaborative implementation of the Action Plan.
About the Strategy
In 2022, RVA published the White Paper, 1 which together with sector consultation, informed development of the Strategy.2
A person-centred approach to implementing this Strategy is essential and is the responsibility of all stakeholders, including governments, hospital administrators, healthcare providers, specialist physician groups and policymakers across states and territories, and at a national level.
Next Steps
RVA will share the Strategy with all key stakeholders
RVA will seek meetings with Commonwealth, State and Territory Governments, Departments of Health and all specialist metabolic services across Australia to discuss timely implementation of the Strategy
As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the collaborative development of the Rare Awareness Rare Education (RARE) Portal for rare diseases. The RARE Portal is one of the key deliverables of the Australian Government’s National Strategic Action Plan for Rare Diseases, the first nationally coordinated effort to address rare diseases in Australia.
The RARE Portal is a living website in ongoing development, with new information added regularly. Download the RARE Portal flyer. Feel free to distribute the flyer among your networks.
A look at the RARE Portal
The RARE Portal:
Is a digital library of verified rare disease information, services and resources
Is customised for the Australian context
Caters for all stakeholders in the rare disease sector and the general public, with dedicated pages for the rare disease community, healthcare professionals and researchers
Is a living website that is responsive to feedback and new knowledge
Highlights strengths and gaps across the rare disease sector, which can inform policy and service development
What’s on the RARE Portal
General information about rare diseases
Information for all stakeholders in the rare disease sector
Services and resources available nationally and in specific states and territories
Rare disease information customised for Aboriginal and Torres Strait Islander people, people from culturally and linguistically diverse backgrounds and people living in regional, remote and rural areas
Individual disease pages developed together with RVA Partner organisations (disease-specific groups)
A-Z Support Directory of rare disease groups
Opportunities for stakeholders to provide ongoing input via a Contribute page
RVA will circulate updates about the RARE Portal as it develops. Please fill out the form below if you’d like RVA to email you RARE Portal-related updates.
Rare Voices Australia (RVA) is looking to recruit a Communications and Engagement Officer. The suitable candidate will have a range of responsibilities, including supporting RVA’s Communications Manager and other staff across various communications and engagement tasks.
If you have proven experience in a similar role and are committed to improving the lives of Australians living with a rare disease, we’d love to hear from you. Applications close Monday 3 April 2023, 5.00pm AEST.
Thank you to everyone for your support of 2023 Rare Disease Day (28 February) and the estimated two million Australians living with a rare disease. Several Rare Disease Day themed events organised by our Rare Voices Australia (RVA) Partner organisations (rare disease groups) and other stakeholders took place to mark the day. It is wonderful to see Rare Disease Day continuing to gain momentum each year. Thank you to everyone for your invaluable contribution!
Watch the video for a snapshot of the events that took place globally.
As the national peak body for Australians living with a rare disease, RVA has put together a summary of highlights for 2023 Rare Disease Day in Australia.
Rare Voices Australia’s Rare Disease Day Parliamentary Event
Dr Mike Freelander MP (Chair, Standing Committee on Health, Aged Care and Sport and Co-Chair, Parliamentary Friends of Rare Diseases) hosted RVA’s Rare Disease Day Parliamentary Event on 8 March. The event theme was, Ensuring Equity for Australians Living With a Rare Disease. Thanks to RVA Ambassador, Renae Wood, for sharing her personal story of living with epidermolysis bullosa and the difference equity can make for people living with a rare disease.
Thank you to our host Dr Freelander, Member for Macarthur, and the following Parliamentarians who spoke at the event:
Hon Mark Butler MP, Minister for Health and Aged Care
Senator the Hon Anne Ruston, Shadow Minister for Health and Aged Care
Senator Wendy Askew, Senator for Tasmania and Co-Chair, Parliamentary Friends of Rare Diseases
Dr Monique Ryan, Member for Kooyong and Co-Chair, Parliamentary Friends of Rare Diseases
RVA acknowledges the many political attendees, including over 20 Parliamentarians and Assistant Ministers (listed below), who attended for their support of Rare Disease Day.
Hon Ged Kearney MP, Assistant Minister for Health and Aged Care
Hon Dr Andrew Leigh MP, Assistant Minister for Competition, Charities and Treasury
Hon Emma McBride MP, Assistant Minister for Mental Health and Suicide Prevention; and Assistant Minister for Rural and Regional Health
Special thanks to our RVA Ambassadors, RVA Partner organisation leaders and other stakeholders who also joined us. See more photos from the event.
Parliamentary Event Hosted by the Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia
RVA was pleased to attend a Rare Disease Day Parliamentary Event on 21 February hosted by the Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia. RVA’s Chief Executive Officer, Nicole Millis; Director, Kane Blackman; Scientific and Medical Advisory Committee member, Clin/Prof Gareth Baynam; Education Project Officer, Jess Brooklyn; and RVA Ambassador, Andrew Bannister were pleased to attend. The event focused on the experiences of people living with a rare disease. Click here to read more.
Global Chain of Lights and Landmark Illuminations in Australia
The Global Chain of Lights is a key Rare Disease Day initiative, with the global community coming together to illuminate landmarks in support of people living with a rare disease. Over 60 landmarks (that RVA is aware of) were illuminated. A big thank you to our small group of volunteers who secured landmark illuminations for 2023 with assistance from RVA as needed and whose efforts are always very much appreciated.
Social Media
Several politicians and the Australian Government Department of Health and Aged Care posted about Rare Disease Day and RVA’s Parliamentary Event across social media.
RVA was excited to take over the official Rare Disease Day social media accounts on 16 February. Thank you to our RVA Ambassadors who filmed short videos for Instagram and TikTok. The Instagram Reel filmed by RVA Ambassador Renae Wood generated over 27,500 views on Instagram and Facebook. Amazing!
Media
Several RVA Partner organisations secured media coverage on Rare Disease Day. Congratulations to everyone who helped to spread the word about the day and rare diseases generally!
What is Rare Disease Day?
Rare Disease Day is the globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. The campaign is organised globally by EURORDIS – Rare Diseases Europe, Rare Diseases International and 68 national alliances. RVA is:
The national alliance that represents Australia for Rare Disease Day annually
A member of the Rare Disease Day Steering Committee that oversees the campaign in the longer-term
The Importance of Rare Disease Day Locally
Locally, Rare Disease Day is an opportunity to raise awareness and inform policymakers on the issues faced by the Australian rare disease community, in an effort to achieve meaningful change. Pillar 1 of the National Strategic Action Plan for Rare Diseases is Awareness and Education, while ‘State, national and international partnerships’ is a critical enabler.
Each year, Rare Disease Day continues to build momentum and planning is already underway for next year, which is a leap year. This means Rare Disease Day will take place on the rarest day of the year (29 February).
Rare Voices Australia (RVA) thanks everyone who attended our Rare Disease Day Parliamentary Event in Canberra on 8 March 2023 hosted by Dr Mike Freelander MP (Chair, Standing Committee on Health, Aged Care and Sport and Co-Chair, Parliamentary Friends of Rare Diseases). The event theme was, Ensuring Equity for Australians Living With a Rare Disease. Thanks to RVA Ambassador, Renae Wood, for sharing her personal story of living with epidermolysis bullosa and the difference equity can make for people living with a rare disease.
As the national peak body for Australians living with a rare disease, RVA was pleased to provide a progress update on implementation of the National Strategic Action Plan for Rare Diseases, which requires ongoing multi-partisan collaboration and support.
Thank you to our host Dr Freelander, Member for Macarthur, and the following Parliamentarians who spoke at the event:
Hon Mark Butler MP, Minister for Health and Aged Care
Senator the Hon Anne Ruston, Shadow Minister for Health and Aged Care
Senator Wendy Askew, Senator for Tasmania and Co-Chair, Parliamentary Friends of Rare Diseases
Dr Monique Ryan, Member for Kooyong and Co-Chair, Parliamentary Friends of Rare Diseases
RVA acknowledges the many Parliamentarians who attended for their support of Rare Disease Day and the estimated two million Australians living with a rare disease.
Special thanks to our RVA Ambassadors and RVA Partner organisation leaders who also joined us. Locally, Rare Disease Day is an opportunity to raise awareness and inform policymakers on the issues faced by the Australian rare disease community, in an effort to achieve meaningful change.
Rare Disease Day occurs on the last day of February annually. In 2023, Rare Disease Day will be marked on Tuesday 28 February. Rare Voices Australia (RVA) will be organising our annual Rare Disease Day Parliamentary Event on Wednesday, 8 March 2023. This event is invite-only to maintain stakeholder balance.
Rare Disease Day is the globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. The campaign is organised globally by EURORDIS – Rare Diseases Europe, Rare Diseases International and 68 national alliances. RVA is the national alliance that represents Australia for Rare Disease Day annually.
2023 Rare Disease Day
The call to action for 2023 is, Share Your Colours. The campaign hashtags are: #RareDiseaseDay #LightUpForRare #ShareYourColours
The Importance of Rare Disease Day Locally
Locally, Rare Disease Day is an opportunity to raise awareness and inform policymakers on the issues faced by the Australian rare disease community, in an effort to achieve meaningful change. Pillar 1 of the National Strategic Action Plan for Rare Diseases is Awareness and Education, while ‘State, national and international partnerships’ is a critical enabler.
Global Chain of Lights and Landmark Illuminations in Australia
The Global Chain of Lights is a key Rare Disease Day initiative, with the global community coming together to illuminate landmarks in support of people living with a rare disease. You can see which landmarks are illuminating for Rare Disease Day in Australia via this document*. Thank you to the small group of volunteers who have secured landmark illuminations for 2023 with assistance from RVA as needed.
*Note: landmark illuminations are subject to change and RVA will continue updating the document as needed.
If you take pictures of the illuminations or other Rare Disease Day activities and would like to share them, please email: [email protected]
Alternatively, you can tag RVA on social media.
Media Pack
RVA has put together a Media Pack for media activity you or your organisation would like to engage in. We encourage you to customise the media release template as needed.
Rare Voices Australia (RVA) is pleased to continue our work in 2023 with Mental Health First Aid (MHFA) Australia to offer a small number of RVA Partner organisation representatives the opportunity to participate in Aboriginal and Torres Strait Islander MHFA training. RVA is also offering Youth MHFA training opportunities in 2023. This work is a continuation of the mental health and wellbeing project that RVA commenced in 2022 (read more here), based on recommendations in the National Strategic Action Plan for Rare Diseases (the Action Plan). This initiative is funded through the Rare Disease Awareness, Education, Support and Training (RAREST) Project.
It is expected that those volunteering to complete the Aboriginal and Torres Strait Islander MHFA training are willing and have the capacity to provide MHFA support to Aboriginal and Torres Strait Islanders living with a rare disease in their community on an ongoing basis. The training is provided using Australian contexts and resources, and the course supports adults (those aged 18+).
Note: this opportunity is available to RVA Partner organisation representatives only.
About Aboriginal and Torres Strait Islander MHFA
This course is for any adult (aged 18+) who is interested in learning how to assist an Aboriginal or Torres Strait Islander adult who may be experiencing a mental health problem or mental health crisis until appropriate professional help is received or the crisis resolves. Read the course flyer.
This course is based on evidence from the expert consensus of Aboriginal mental health professionals, many of whom also have lived experience of mental health problems. Watch the video to learn what to expect from the course.
Maximising your participation in this course
To maximise your participation in the Aboriginal and Torres Strait Islander MHFA training, RVA asks that:
You have access to and can use a computer with an internet connection to participate in the course via videoconference
You are currently a rare disease group leader or are in a position of leadership within an RVA Partner organisation
You did not complete an online blended community MHFA course funded by RVA in 2022
What is the cost?
RVA has funding to cover a limited number of participants to complete the Aboriginal and Torres Strait Islander MHFA course.
If you are interested in participating, please email Louise Healy, RVA’s Education and Advocacy Manager: [email protected]
On behalf of Rare Voices Australia (RVA) and the estimated two million Australians living with a rare disease, thank you to everyone who made the 2023 Sawatzky Cup tennis tournament possible on 22 January 2023. Over $11,000 has been raised with all proceeds going to RVA. These funds will help RVA continue overseeing the collaborative implementation of the National Strategic Action Plan for Rare Diseases (the Action Plan), the first nationally coordinated effort to address rare diseases in Australia.
Since the Action Plan’s launch in 2020, Australia’s rare disease sector has been collaboratively progressing its implementation and RVA has been leading this important work. Developed by the rare disease sector, for the rare disease sector, the Action Plan aims to deliver the best possible health and wellbeing outcomes for Australians living with a rare disease.
Images supplied by Scotty’s Media, official photographer and videographer for the 2023 Sawatzky Cup
Special thanks to the event organiser, Norman Burns, who made the event a reality in honour of his mate and the much-loved Ross Sawatzky. Norman has put an incredible amount of effort and work into organising the tournament.
RVA also thanks the Sawatzky family and everyone who supported the event, including the players; sponsors; spectators; those who donated; and everyone else involved. There’s still time to make a donation via this link.
RVA Director, Kane Blackman; RVA Scientific and Medical Advisory Committee (SMAC) member, Dr Kristen Nowak; Jess Brooklyn, RVA’s Education Project Officer; and RVA Ambassador, Andrew Bannister, were excited to attend the event and share more about rare diseases.
Images supplied by Andrew Bannister, RVA Ambassador
About rare diseases
• An estimated two million Australians are living with a rare disease • It is prominently cited that there are more than 7,000 different rare diseases • There is no cure for many rare diseases, so improving quality of life and extending life expectancy of people living with a rare disease is vital
Please note
You are now leaving the Rare Voices Australia website to go to the Orphanet website.
Orphanet is a globally renowned portal for rare diseases and orphan drugs. The portal aims to provide high-quality information about rare diseases, and ensure equal access to knowledge for all stakeholders.
Please click here to continue to Orphanet: www.orpha.net
