Rare Voices Australia is Hiring: Operations and Compliance Manager

RVA is looking for an Operations and Compliance Manager ​to join our passionate and dedicated team! RVA is Australia’s national non profit peak body, representing people who live with a rare disease. We are dedicated to working with all stakeholders to drive the best outcomes for Australians living with a rare disease.

The successful candidate will play a key role in identifying and facilitating the necessary operational compliance systems for the organisation. The Operations and Compliance Manager will engage with RVA’s Chief Executive Officer and staff to support operational compliance administration.

Download this PDF for the full position description. Applications close at 5pm (AEDT) on 4 October 2021.

Rare Voices Australia is Hiring: Project Officer – Mental Health and Wellbeing

RVA is looking for a Project Officer – Mental Health and Wellbeing ​to join our passionate and dedicated team! RVA is Australia’s national non profit peak body, representing people who live with a rare disease. We are dedicated to working with all stakeholders to drive the best outcomes for Australians living with a rare disease.

The Project Officer – Mental Health and Wellbeing will play a key role in delivering the RArEST (Rare Awareness, Education, Support and Training) Project. The RArEST Project will contribute to the collaborative implementation of the National Strategic Action Plan for Rare Diseases. The successful candidate will work alongside the Rare Voices Australia team to identify the unmet needs of Australians living with a rare disease. The Project Officer – Mental Health and Wellbeing will help to research, design and deliver customised and evidence-based mental health and wellbeing resources to a range of stakeholders in the rare disease community.

Download this PDF for the full position description. Applications close at 5pm (AEDT) on 4 October 2021.

Public Consultation Open: National Disability Insurance Scheme Legislation Reforms

The Australian Government is proposing changes to National Disability Insurance Scheme (NDIS) legislation with the goal to make processes easier and better for NDIS participants. The proposed changes are informed by the outcomes of the 2019 independent review of NDIS legislation, which was conducted by David Tune AO PSM. The Government is engaging in a public consultation to gather feedback about the legislation reforms.

The proposed Bill

The proposed Bill will make amendments to the NDIS Act and Rules, giving effect to 14 of the Tune recommendations, in whole or in part. A key recommendation is the introduction of a Participant Service Guarantee to set standards for how long NDIS processes (e.g. approving or amending an NDIS Plan) will take and how the National Disability Insurance Agency (NDIA) will work with those living with a disability. Read more via the Department of Social Services’ Engage website.

Public consultation process – open until midnight, 7 October 2021

The Government is accepting feedback and submissions regarding the legislation reforms until midnight, 7 October 2021. Click here to learn how you can register for one of the public consultation briefing sessions and here for how you can make a submission.

Rare Voices Australia (RVA) has written to the Minister for the NDIS and key Opposition spokespeople to express concern that the length of the consultation period is inadequate for such a significant consultation. We have requested that the consultation period be extended and will inform you of the outcome of this request.

RVA will lodge a submission and we encourage those living with a rare disease who are NDIS participants, or whose community members are NDIS participants, to lodge a submission. This will ensure that the voices of people living with a rare disease, as well as their families and carers, are heard.

RVA Partner organisations that are looking to lodge a submission into this public consultation are encouraged to reach out to RVA for mentorship support: communications@rarevoices.org.au

Why this consultation is important for people living with a rare disease

There is clear cross over between many rare diseases and disability. Aspects of the National Strategic Action Plan for Rare Diseases (the Action Plan) specifically address the NDIS and the arbitrary and unhelpful line that is often drawn between medical issues and disability. In particular, the Action Plan highlights the need for coordinated and integrated care (see Appendix 1).

Since 2012, RVA has consistently highlighted the impact of disability on the lives of people living with a rare disease. In 2019, RVA commissioned the McKell Institute to deliver a white paper, Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases, which informed the Action Plan.

Time Sensitive RVA Partner Opportunity: Influence Research and Interact with the Global Rare Disease Community

The EURORDIS Rare Barometer Project is developing a global survey on diagnosis. EURORDIS is working with Rare Voices Australia (RVA) to include Australian perspectives in this work. EURORDIS is keen to talk to Australian rare disease organisation leaders to help them develop the final questionnaire. 

The Project Team has decided to pursue a different approach to the methodology. Instead of conducting one-to-one interviews, they will invite patient advocates to a live online community where they can take part in individual activities and collective discussions with other participants.  

The online community will take place from 20 – 24 September. And include patient advocates from Europe as well as the identified target countries, which include Australia. Participants will take part in 15-20 minutes of activity each day for five days on an online platform where new questions will be posted, and new discussions will be assigned each day by a moderator.

Participants are asked to pre-register by filling in this pre-registration form no later than 16 September.

The online platform will be facilitated by an independent research institute (OpinionWay Healthcare). Participants can answer questions by posting a text, image or video. During this phase, there are only limited places available on the platform, and participants will be selected based on the study criteria by EURORDIS.

RVA staff have preregistered but were also keen to open up this opportunity to RVA Partner organisations with an interest in diagnosis and/or informing research design.

Rare Voices Australia Research Update: April — July 2021

Rare Voices Australia (RVA) has continued investing heavily in rare disease research in 2021 to gather evidence for policy reform that leads to better outcomes for Australians living with a rare disease. We are dedicated to building an active presence in the rare disease research arena. At RVA, we work across the research continuum to identify needs or gaps, develop research questions, and engage in research co-design. RVA supports the need for high-quality collaborative research, welcoming genuine partnerships (see RVA’s Guidelines for Research Partnerships) with groups planning or undertaking research of all types that broadly aligns with one or more of the research priorities detailed in the National Strategic Action Plan for Rare Diseases (the Action Plan). We also conduct and commission field research to build evidence for disease prevention, better clinical outcomes, and access to government-funded treatments, diagnostic tools and care pathways for all Australians living with a rare disease.

Since the launch of the Action Plan by the Minister for Health in February 2020, with bipartisan support, a pragmatic shift has highlighted the importance of investing in rare disease research in Australia. This is evident in recent and ongoing investments of the Medical Research Future Fund (MRFF) into Rare Cancers, Rare Diseases and Unmet Need, and the Genomics Health Future Mission.

Research at RVA is collaborative, person-centred and broadly applicable to all rare diseases. RVA aims to invest in all types of rare disease research, including rare disease coding, data collection, fundamental discovery research, qualitative research, pre-clinical testing, diagnostics and clinical trials. RVA continues to make significant contributions to rare disease research in ways that progress the implementation of the Action Plan. Some of this work is showcased in the paragraphs that follow.

Priority 1.3: Develop a national rare disease workforce strategy that responds to current and future demands, including the impact of genomics.

RVA has recently commissioned Equity Economics to gather evidence around existing strengths and gaps in the rare disease workforce, using the rare metabolic workforce as an example. According to anecdotal evidence from the metabolic healthcare workforce, the number of qualified metabolic specialists is plummeting, and we are not prepared for future demand. To progress this work, we have sought input from metabolic patients and the metabolic healthcare workforce to get a holistic snapshot of the healthcare system to inform a more sustainable and equitable metabolic workforce. The outcomes of this case study will highlight synergies across rare disease healthcare, which we can leverage and apply more broadly across the sector.  

Action 3.1.4: Develop a national approach to person-centred rare disease registries to support national standards, best practice and minimum data sets.

Multiple research papers and stakeholder consultation processes in Australia have identified the need for a national, coordinated, and systematic approach to the collection and use of rare diseases data, including registries. According to EURORDIS–Rare Diseases Europe, rare disease registries are ‘indispensable infrastructure tools for translating basic research and clinical expertise into therapeutic tools’. Registries are vital to growing our basic understanding of rare diseases, developing new treatments, and improving patient care. However, despite the value of clinically-led patient registries in particular, infrastructure for rare disease registries in Australia is not a priority. RVA recognises registries as an effective way to improve rare disease data collection and use. In 2018, RVA established the National Alliance of Rare Disease Registries to bring registry operators together to build a national strategy and foundation for rare disease registries, with the aim of attracting federal investment for registry sustainability. To progress Action 3.1.4 further, RVA are collaborating on an Australian rare disease registry scoping project led by Professor Susannah Ahern, head of the Registry Science and Research Program, and Doctor Rasa Ruseckaite, deputy head of the Clinical Outcomes Data Reporting and Research Program, at Monash University. Watch this space for more updates on this important work.

In-kind support for researchers

RVA’s expertise in rare disease advocacy, policy and Heath Technology Assessment processes are sought after by researchers because they are critical to systemic reform. Advocacy for systemic reform was emphasised in the stakeholder consultations that informed the development of the Action Plan. To this end, RVA has been providing letters of support and other in-kind support to rare disease researchers seeking funding for research broadly applicable to, or at least a steppingstone to, broader systemic change for rare disease care. RVA’s recent contributions of in-kind support to grants and our work co-writing grants have been exceedingly successful. This can be seen with the announcement of MRFF funding for the Genomics Health Future Mission awarded to some of RVA’s research partners, and RVA’s award of funding from the Australian Government’s Rare Disease – Support, Education and Training Grant. Click here to read more about the Rare Awareness, Education, Support and Training (RArEST) project.

Other ways RVA has been engaging in research in 2021

Earlier this year, RVA’s CEO, Nicole Millis, co-authored a paper published in the Journal of Paediatrics and Child Health. This paper brought the Action Plan into focus. It shone a light on the need to build knowledge with the input of all stakeholders, including researchers—a need to which RVA is committed. The paper also proves that patient advocate leaders and the public can and should be published in peer-reviewed journals. RVA has also been:

  • Participating as an independent patient advocate on steering committees or patient advisory committees for clinical trials and other relevant projects.
  • Leading the collaborative development of the Rare Awareness Rare Education (RARE) Portal, a living website of rare disease information and resources for people living with a rare disease and their families and carers, researchers, clinicians and allied health professionals.
  • Participating in peer review processes on relevant grant review panels.
  • Influencing government investment in research through consumer-centred systemic advocacy. For example, RVA motivated broader and ongoing investment in the MRFF Rare Cancers, Rare Diseases and Unmet Need Grant opportunity.
  • Providing education for RVA Partner Organisations on ways to engage meaningfully in research, via RVA’s Rare Disease Research in Australia three-part webinar series (available soon on RVA’s Online Education Portal, which is almost ready to launch).

If you are a researcher looking to partner with RVA, please read RVA’s Research Partnership Guidelines and contact us if you have any questions. Or, if you are an RVA Partner or a rare disease support organisation wanting to learn more about engaging effectively in research, please contact RVA at research@rarevoices.org.au.

Patient or Carer Experience Survey: Strengthening the Rare Disease Healthcare Workforce in Australia

Rare Voices Australia (RVA) has engaged Equity Economics and Development Partners to undertake a rare metabolic disease workforce study. This study aims to understand the current strengths and weaknesses in the healthcare provided to metabolic patients in Australia. The study will collect input from the metabolic healthcare workforce (e.g. clinicians, nurses, dietitians, genetic counsellors, diagnostic scientists) patients, carers and families navigating the healthcare system. Developing a national rare disease workforce strategy that responds to current and future demands is a key priority of the National Strategic Action Plan for Rare Diseases – and it needs the patient voice and expertise.

As part of this study, we are conducting a Patient or Carer Experience Survey to understand the lived experiences of people accessing the metabolic healthcare workforce. The Survey will close at 17:00 (AEST) on Tuesday 7 September 2021.

If you or someone you care for has a rare metabolic disease, or accesses metabolic services to treat a rare disease, please complete the survey.

Please share this survey with your network so we can reach as many people as possible. This important work will create evidence to build on strengths and fill gaps in metabolic healthcare for all Australians living with a rare disease. 

Newborn Bloodspot Screening Update: Victoria

Congratulations to RVA Partner, Congenital Adrenal Hyperplasia Support Group Australia, for their successful advocacy on behalf of their community resulting in the pilot screening for congenital adrenal hyperplasia (CAH) on the Victorian Newborn Bloodspot Screening (NBS) Program!  

Rare Voices Australia (RVA) welcomes the Victorian Government’s announcement and thanks them for their ongoing engagement with RVA regarding this issue. NBS is an important program that supports the earliest possible diagnosis of this rare disease. As outlined in the National Strategic Action Plan for Rare Diseases, early diagnosis is critical for better patient outcomes as it enables the best immediate treatment and care.   

RVA will continue to work with the Commonwealth and State Governments with a focus on achieving a nationally equitable, consistent and sustainable NBS Program.  

Click here to read more.

Formation of the first Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia

Rare Voices Australia (RVA) welcomes the formation of the first Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia (WA)!

The Hon Matthew Swinbourn MLC, Hon Donna Faragher MLC and Hon Stephen Pratt MLC have come together to increase awareness about rare and undiagnosed diseases in WA. The non-partisan Parliamentary Friendship Group aims to provide opportunities for Members of Parliament to learn about the needs of people with rare and undiagnosed diseases, as well as the challenges and opportunities involved in providing care and support to them. Click here to learn more and here to watch the Hon Matthew Swinbourn MLC announce the formation of the Group in the Parliament of Western Australia.

RVA looks forward to working with the Parliamentary Friendship Group on the issues that impact those living with a rare disease, their families and carers, including WA’s response to the priorities, actions and implementation steps outlined in the National Strategic Action Plan for Rare Diseases.

Newborn Bloodspot Screening Update: Western Australia

Rare Voices Australia (RVA) welcomes the Western Australian (WA) Government’s commitment to begin the implementation process to add congenital adrenal hyperplasia (CAH) to WA’s Newborn Bloodspot Screening (NBS) Program. Phase one of implementation involves the establishment of the required staffing and equipment, in accordance with the national recommendation endorsed by Australian Governments, to ensure the successful rollout of quality and safe screening of infants for CAH. Today’s announcement is a positive step forward for RVA Partner, Congenital Adrenal Hyperplasia Support Group Australia, and the CAH community. RVA urges the WA Government to prioritise the timely completion of this initial implementation phase so that the screening of babies can commence as soon as possible.

Additionally, the Hon Roger Cook, WA’s Minister for Health, has announced funding for a pilot project that will enable NBS for spinal muscular atrophy (SMA) following preparation of the required equipment, training of staff, development of testing protocols and clinical and care pathways. This announcement is encouraging for RVA Partner, SMA Australia, and the SMA community.  

RVA welcomes both announcements and thanks the WA Government for their ongoing engagement with RVA regarding this issue. NBS is an important and life-changing program that screens for certain rare genetic conditions and metabolic disorders. As outlined in the National Strategic Action Plan for Rare Diseases, early diagnosis enables the best clinical care, treatment options, access to services, peer support, increased reproductive confidence and access to participation in clinical trials.  

As with the Commonwealth and other State Governments, RVA will continue to engage with the WA Government to ensure the increased sustainability, equity and transparency of the NBS Program across Australia.

Click here to read the WA Government’s media release.

Rare Voices Australia Education and Mentoring Update: May – July 2021

Rare Voices Australia’s (RVA) Education Program and mentoring support is tailored towards the needs of individual RVA Partner organisations and their unique strategic goals and aims. 

RVA’s Education Program

RVA’s Education Program includes regular education webinars, sessions for individual organisations, customised mentoring support and a suite of education resources, including our soon-to-be launched Online Education Portal. Click here for more information about our RVA Partner benefits and how to become an RVA Partner.

May – July 2021 update

Mentoring support

We have provided mentoring support to RVA Partners across a range of areas including Pharmaceutical Benefits Advisory Committee (PBAC) applications, research, political advocacy for legislative change, working with clinical trials investigators, research collaborations, lodging Government submissions, centres of excellence and newborn screening. RVA’s mentoring support often sees us leveraging our extensive network and drawing on the deep and broad expertise of our Scientific and Medical Advisory Committee (SMAC). 

Please contact Louise, RVA’s Education and Advocacy Manager, regarding all mentoring enquiries: education@rarevoices.org.au

Tailored education sessions

RVA has delivered tailored education sessions to a number of RVA Partner organisations and their communities. The following topics have been covered to date:

  • Introduction to Advocacy
  • Understanding Drug Development and Approval Processes in Australia
  • Understanding the National Strategic Action Plan for Rare Diseases
  • Tips for Making a Consumer Comment to the PBAC
  • Political Advocacy Strategies

RVA Partner organisations are welcome to request a customised session about a topic relevant to their community. Contact Louise to suggest a topic for a future session: education@rarevoices.org.au

RVA Education webinars

RVA has facilitated the following education webinars as part of our Education Strategy:

  • Fundraising Approaches for Rare Disease Organisations
  • Rare Disease Research in Australia (three-part webinar series)

Limited places are still available to attend the research webinars. Learn about webinar one on Thursday 29 July and webinar two on Thursday 5 August. To RSVP, reach out to Louise: education@rarevoices.org.au

RVA has also facilitated additional webinars to respond in a timely manner to pressing issues that impact the rare disease community.

Online Education Portal (coming soon)

Our team has been progressing work on our new Online Education Portal, which will be launching soon. All content will be available to RVA Partners.

A number of emerging and newly established rare disease organisations are currently road testing a draft version of our Guide to Starting a Rare Disease organisation in Australia. Once finalised, the Guide will be available online and as a hardcopy.

We have also been developing numerous online programs that will be released soon to RVA Partner organisations for feedback. They include:

  • Amplifying Advocacy Using the National Strategic Action Plan for Rare Diseases
  • How to Illuminate Landmarks to Celebrate Awareness Days

Our team is very excited to launch these self-paced programs that will be available on a 24/7 basis! We will also be developing further online learning resources.

It is always a great pleasure to support our RVA Partners in the important work they do. The passion, commitment and dedication of this community is truly inspiring.

Click here for more information about becoming an RVA Partner.