Author: Sarah Cannata

Rare Voices Australia (RVA) is seeking a talented web developer with experience in user interface (UI)/user experience (UX) design to join our growing team. As a web developer, you will help to shape, grow and maximise RVA’s evolving online presence. You’ll be required to assist with designing, coding and modifying our existing websites, while ensuring a user-friendly and accessible online experience.

Note: this is a remote role and location is flexible. Applications close at 5pm (AEST) Sunday, 1 October.

Download the full position description.

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is dedicated to driving the best outcomes for Australians living with a rare disease, including Aboriginal and Torres Strait Islander peoples. Aboriginal and Torres Strait Islander peoples were identified as a priority population in the Australian Government’s National Strategic Action Plan for Rare Diseases. While Aboriginal and Torres Strait Islander peoples are not necessarily at greater risk of rare diseases, several factors increase the potential impact of rare diseases on Aboriginal and Torres Strait Islander peoples.

On Saturday, 14 October 2023, Australians will vote in a referendum about whether to change the Constitution to recognise the First Peoples of Australia by establishing a body called the Aboriginal and Torres Strait Islander Voice (the Voice). RVA has published a Statement and welcomes the referendum as it provides Australians with the opportunity to change the Constitution to recognise the First Peoples of Australia by establishing the Voice. Read the full Statement (PDF).

RVA has always acknowledged the diversity in the rare disease sector and similarly, we understand there will be a diversity of views across peoples and communities concerning the Voice to Parliament. We encourage all stakeholders in the rare disease sector to engage in respectful and informed dialogue regarding all matters, including the Voice to Parliament.

Download the Statement

RVA Statement: Aboriginal and Torres Strait Islander Voice to Parliament (PDF)

Rare Voices Australia (RVA) is looking to recruit a Project Manager for The Navigator Project (Rare and Complex Disease Telehealth Nurse Program). The suitable candidate will have a range of responsibilities, including being responsible for project management, project reporting and overseeing project deliverables for The Navigator Project.

If you have proven experience in a similar role and are committed to improving the lives of Australians living with a rare and complex disease, we’d love to hear from you. Applications close at 5pm (AEST) Friday, 29 September.

Download the full position description.

Rare Voices Australia (RVA) is looking to recruit a RARE Helpline Manager. The suitable candidate will have a range of responsibilities, including managing and supervising the day-to-day operations of the newly established RARE Helpline.

If you have proven experience in a similar role and are committed to improving the lives of Australians living with a rare and complex disease, we’d love to hear from you. Applications close at 5pm (AEST) Friday, 29 September.

Download the full position description.

Rare Voices Australia (RVA) is looking to recruit a Communications and Information Officer. The suitable candidate will have a range of responsibilities, including supporting RVA’s Communications Manager and our small Rare Awareness Rare Education (RARE) Portal team 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 at 5pm (AEST) Friday, 29 September.

Download the full position description.

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is continuing our National Disability Insurance Scheme (NDIS) advocacy to address systemic issues and gaps for people living with a rare disease who are also NDIS applicants or participants.

RVA is recognised by the National Disability Insurance Agency (NDIA) as a key peak body, and in that capacity, is meeting monthly with the NDIA’s stakeholder engagement team to discuss opportunities for co-design and consultation with the NDIA.

Significant work is needed to contribute to the systemic changes required for the NDIS to better respond to the needs of Australians living with a rare disease. To assist, RVA has engaged Fiona Lawton to provide expert input and additional advocacy capacity. Fiona is well known to many in the rare disease community in her capacity as President of RVA Partner, Angelman Syndrome Association Australia, and is recognised for her extensive knowledge of the NDIS and expert understanding of legislation. Fiona’s drive and expertise has strengthened and progressed the advocacy priorities identified by RVA Partners (rare disease groups/organisations).   

Disability Representative and Carer Organisations (DRCOs)

Our meetings with the stakeholder engagement team have led to discussions with the NDIA regarding the possibility of RVA joining the group of 27 peak bodies that form the Disability Representative and Carer Organisations (DRCOs). The DRCOs are part of the ‘Co-design Advisory Group,’ which was established in 2021, and includes the NDIS Independent Advisory Council (the Council), the Department of Social Services (DSS), NDIA board members and senior executives.

On 4 August 2023, the DRCOs and the Council met to discuss the Australian Government’s range of key reforms to improve the outcomes for people with a disability and help secure the ongoing sustainability of the NDIS. This new initiative, known as the ‘Reform for Outcomes Program,’ consists of working groups to explore workforce capability, better planning, flexibility, independent living, evidence-based supports and fraud. Several of these key areas are identified as priorities in the Australian Government’s National Strategic Action Plan for Rare Diseases, including workforce capability, better planning and evidence-based supports.

In August, RVA’s Chief Executive Officer, Nicole Millis, met with the Minister for the NDIS, the Hon Bill Shorten MP’s office, to highlight the importance of RVA’s involvement in any co-design activities, including the Reform for Outcomes Program. This will ensure that the needs of the estimated two million Australians living with a rare disease are reflected in future policy, strategy and practice. As the national peak body for Australians living with a rare disease, RVA continues to advocate to be included in current and future co-design activities and is making direct applications to several DRCOs to ensure that the needs of Australians living with a rare disease are considered. At this stage, it is still unclear if any DCROs would be able to effectively represent Australians living with a rare disease, due to their membership criteria and current priorities.

National Disability Insurance Scheme Independent Review

In June, RVA provided a detailed 17-page Submission to the NDIS Independent Review, which contained insights from the workshops RVA facilitated throughout 2021 and 2022 with several RVA Partner groups/organisations and the NDIA. RVA’s Submission also incorporated insights from ongoing discussions with the broader rare disease community. The NDIS Independent Review was established by Minister Shorten in October 2022 and has received over 2,500 submissions to date. The Independent Review Panel reports to the National Cabinet and will make findings and recommendations to the Disability Reform Ministerial Council (DRMC), which consists of Commonwealth, state and territory ministers with responsibility for disability policy. At this stage, RVA has been told the findings and recommendations will be made available in late 2023.

Download RVA’s Submission (PDF).

RVA was invited to meet with the NDIS Review Secretariat on 24 August 2023 to discuss how several of the recommendations contained in our Submission could be implemented. This was a positive and encouraging discussion.

RVA’s Submission was also provided to the Shadow Minister for the NDIS, the Hon Michael Sukkar MP, at a small group meeting on 15 August 2023 to discuss the current challenges and opportunities facing the NDIS.

Final submissions to the NDIS Independent Review are due by 1 September 2023, after which public submissions, including RVA’s Submission will be available on the NDIS Review website. A formal report will be provided to the Disability Reform Ministers Council in October 2023 for consideration. RVA has expressed our strong desire to participate in the co-design and implementation of the recommendations put forward in our Submission.

Acknowledgements

RVA thanks Louise Healy, RVA’s Education and Advocacy Manager, and disability projects liaison, Fiona Lawton, for leading this work on behalf of RVA.

Rare Voices Australia (RVA) is progressing work on The Navigator Project, which was named the recipient of the Rare and Complex Disease Telehealth Nurse Program grant. Read the Australian Government’s media release. The Navigator Project will support the estimated two million Australians living with a rare disease to navigate the health system, including via the assistance of telehealth nurses. You can read more about The Navigator Project’s three core components via this article on RVA’s website.

Expressions of Interest Open

RVA is seeking expressions of interest (EOI) from experienced consumer-led rare and complex disease organisations already providing disease-specific telehealth service navigation to implement the third component of The Navigator Project. Upon the completion of the EOI process, three organisations will be selected to work with RVA to provide specific services. Selection will be based on an open competitive process, and RVA will accept submissions until 5pm (AEST time), 29 September 2023.

Download the selection criteria and EOI details (PDF).

Download the template for the EOI Application Form (Word).

Funding amount: $20,000 (+GST) per grant year for three years, totalling a maximum amount of $60,000 (+GST)

Important: for organisations interested in lodging an EOI, please note that the funding provided for this component of The Navigator Project is not for service provision. Before lodging an EOI, please read the selection criteria carefully to ensure your organisation is a suitable candidate.

Purpose: Engagement with Three Consumer-Led Rare and Complex Disease Organisations

The purpose of this component of The Navigator Project is to establish the benefits of an existing patient navigation model and contribute to the project’s overall data collection and reporting. This will involve information sharing to support continuous improvement of telehealth nurse-led services for people/families living with a rare and complex disease, while also providing an evidence base for alternate patient navigation models for rare and complex diseases.

How the Successful Organisations Will Benefit from Participating

The three successful organisations will benefit from participation in The Navigator Project through representation on the Expert Advisory Group and as such, will support a community of best practice telehealth care and navigation. Additional benefits are outlined in the selection criteria and EOI details.

Lodging An Expression of Interest

Download the selection criteria and EOI details (PDF).

Download the template for the EOI Application Form (Word).

Submission time and date: 5pm (AEST), 29 September 2023

If you have any queries about the EOI process, please email navigatorproject@rarevoices.org.au with the subject line, “EOI Query – The Navigator Project”.

Please direct all other queries regarding The Navigator Project to: navigatorproject@rarevoices.org.au.

Combined, the National Health and Medical Research Council’s Medical Research Endowment Fund (MREA) and the Medical Research Future Fund (MRFF) award approximately $1.5 billion in health and medical research grants every year. The National Health and Medical Research Council (NHMRC) typically funds investigator-led (that is, led by a researcher or researchers) grants focused on fundamental discovery research looking at the underlying biology of disease, clinical care as well as public health and health systems research. In 2015, the Australian Government launched the MRFF to fill a noticeable gap in priority-driven translational research. Due to the high levels of unmet need and limited knowledge in rare diseases, the MRFF’s approach to funding has been transformative for rare disease research.

The Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) and Rare Voices Australia’s (RVA) strong relationships with policymakers and health departments have enabled greater investment in rare disease research, particularly through the MRFF. As the national peak body for Australians living with a rare disease, RVA’s advocacy was critical in highlighting the need for a greater rare disease research focus in Australia, which led to the MRFF’s investment in the Rare Cancers, Rare Diseases and Unmet Need competitive grant program. The Action Plan —developed by the rare disease sector, for the rare disease sector—further highlights the need for more coordinated investment into rare disease research.

Improving Alignment and Coordination between the National Health and Medical Research Council’s Medical Research Endowment Account and the Medical Research Future Fund

On 19 June 2023, together with clinicians, researchers and leaders from a range of research institutions and universities across Queensland and New South Wales, RVA was invited to a roundtable discussion to contribute rare disease expertise to discussions around the future governance and administration of the MREA and the MRFF. RVA used this opportunity to highlight the critical importance of embedding research into clinical care for people living with a rare disease, and the need for research that builds evidence for policy-driven equitable access to innovative healthcare. RVA also called attention to the need to include all stakeholders (including consumers and peak bodies, policymakers, federal, state and territory hospitals and health administrators, early, mid and late career researchers, clinicians, and clinician-researchers) in any new governance advisory structure for the delivery of health and medical research funds in Australia.

Rare Voices Australia Submission

RVA provided a written submission to this consultation addressing the current strengths and weaknesses of the MREA and the MRFF for rare disease, and the newly proposed governance and administration models. RVA’s detailed position on this consultation, which informed our submission, is linked below, together with condensed responses to the Guiding Questions of the consultation. Please read the Health Minister’s Discussion Paper for more information about the models that were proposed to support discussions for this consultation.

Download RVA’s detailed position (PDF)

Download RVA’s submitted responses to the Guiding Questions (PDF)

One of Rare Voices Australia’s (RVA) formal research partnerships was chosen for funding under the Medical Research Future Fund (MRFF) Preventive and Public Health Research Initiative 2022 Assessment of High-Cost Gene Treatments and Digital Health Interventions Grant Opportunity. RVA congratulates lead researcher Professor Kirsten Howard, from the University of Sydney, and the incredible team of researchers and other partners on this successful outcome.

This program of work is entitled, Development of a generalisable evaluation framework for high upfront-cost gene therapies: clinical, financial, ethico-legal and cultural considerations. It will address key challenges associated with the assessment of gene therapies for reimbursement, directly informed by stakeholder preferences and ethical and equity considerations. This work directly responds to the following actions under the Care and Support Pillar of the Australian Government’s National Strategic Action Plan for Rare Diseases:

Action 2.4.1

Develop policy that supports people living with a rare disease to have timely and equitable access to new and emerging health technologies.

Action 2.4.3

Ensure people living with a rare disease have equitable access to medicines with demonstrated clinical benefit for a rare disease, including those that are already funded for another condition.

RVA provided a Letter of Support to this grant and has committed to the following roles in this research program:

• Provision of rare disease consumer and policy expertise on the project advisory board
• Support to disseminate results from this research to the rare disease community
• Support with project governance
• Participation in face-to-face Knowledge Exchange Workshops
• Ad hoc policy advice across the two-year duration of this project

More information about RVA’s formal Research Partnerships Program can be found on RVA’s website.