Category: RVA News

Rare Voices Australia’s (RVA) role in identifying evidence gaps and proactively partnering with researchers and other experts to address unmet areas of need in research continued growing throughout 2023. Our research work aligns with the priorities, actions and implementation steps in the Research and Data Pillar of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan).

Rare Voices Australia Research Partnerships

RVA received over 16 requests for partnerships from rare disease research teams across Australia in 2023 making for another busy year for RVA Research Partnerships. Twelve RVA Research Partnership requests were for RVA involvement on Medical Research Future Fund (MRFF) grants, and one was on a National Health and Medical Research Council grant. At the time of writing, 4 RVA Research Partners have been selected for funding, and 5 are yet to be announced.

Throughout 2023, RVA has also been actively involved in several RVA Research Partnerships established in previous years. RVA’s roles on these projects range from involvement on steering committees and advisory groups, to document review and co-design. RVA offers researchers broad rare disease stakeholder knowledge and consumer expertise as the national peak body for Australians living with a rare disease, including a strong track record in effective rare disease advocacy and policy influence.

RVA’s Research Partnership Guidelines have also undergone two reviews this year, and we have a new online Research Partnerships Proposal form for researchers to request a partnership. This new process aims to encourage researchers to engage with the Action Plan and increase transparency around how RVA partners with researchers. Through this more streamlined and transparent workflow, RVA will have greater capacity to actively participate in research.

For more information on RVA Research Partnerships and to access the form, please visit the Research Partnerships page on RVA’s website.

RVA Research Reports

This year, RVA published several evidence-based reports progressing different areas of the Action Plan. RVA acknowledges the collective efforts of all those involved in the development of the following reports. RVA will continue to use these reports in its systemic advocacy to drive the best outcomes for Australians living with a rare disease.

National Strategy for Australia’s Rare Metabolic Workforce

Recommendations for a National Approach to Rare Disease Data

2023 Status Report: Implementing the National Strategic Action Plan for Rare Diseases

Rare Voices Australia’s broader influence on Australian health and medical research funding for rare diseases

RVA has built strong relationships with the Health and Medical Research Office (HMRO) through active contributions to discussions around the future governance and administration of the Medical Research Endowment Account and the MRFF. This included a written response to the public consultation, and an invitation to join a range of stakeholders from universities and institutions to share rare disease peak body perspectives at a roundtable in Brisbane in August. For more information about this work, please visit this news article on RVA’s website: Rare Voices Australia’s Submission on the Future Governance and Administration of Australian Health and Medical Research Funding.

RVA has also built relationships with the MRFF Clinical Trials Activity Scheme leads, prompted by an independent evaluation of this grant opportunity. More information about the evaluation and RVA’s response is available in this news article on RVA’s website: Evaluation of the Medical Research Future Fund Clinical Trials Activity Final Report.

RVA is committed to maintaining strong relationships with the HMRO to encourage greater investment in rare disease research and clinical trials and increase the uptake of relevant grant schemes intended to support the efforts of Australian rare disease researchers.

Other work

Aside from formal RVA Research Partnerships, RVA has shared recruitment materials for several research projects, and actively contributed rare disease expertise to a variety of research reports, documents and consultations. These include:

• Feedback on the Australian Clinical Trials Alliance’s recommendations for ‘Advancing clinical trial engagement, involvement, and participation for people from culturally and linguistically diverse backgrounds’
• Feedback on and endorsement for the final Stakeholder Report from the MRFF funded A-GLIMMER study on genetic testing and life insurance
• Feedback on and endorsement for the Australian Health Practitioner Regulation Agency’s (AHPRA) public consultation on their draft Interprofessional Collaborative Practice (IPCP) Statement of Intent
• Submission to the public consultation on proposed revisions to Section 4 of the National Statement on Ethical Conduct in Human Research
• Feedback to the Australian Commission on Safety and Quality in Health Care’s Draft Quality Standards for Institutions and Human Research Ethics Committees under the National Mutual Acceptance Scheme
• Feedback on and endorsement for Involve Australia’s Guidelines for Community Involvement in Genomic Research

Rare Voices Australia (RVA) thanks everyone who attended our inaugural Queensland Parliamentary Event dedicated to people living with a rare disease.

This drop-in event provided RVA Partner group/organisation leaders with the chance to interact directly with parliamentarians who stopped by to meet RVA and others who represent people living with a rare disease.

As the national peak body for Australians living with a rare disease, the Parliamentary Event provided RVA with the opportunity to advocate for the following strategic aims:

• Advocate for a stronger presence in Queensland’s Parliament
• Work with parliamentarians to develop an implementation plan for progressing relevant aspects of the Australian Government’s National Strategic Action Plan for Rare Diseases
• Identify the relevant division within Queensland’s Department of Health responsible for progressing a strategic approach to rare diseases

Rare Voices Australia (RVA) invites leaders of RVA Partner groups/organisations to attend a webinar on Wednesday, 22 November 2023 from 12pm to 1:30pm (AEDT) about a new flagship research study on preferences for genomic testing.

As the national peak body for Australians living with a rare disease, RVA is working in partnership with researchers, decision-makers, and other consumer representatives on a co-designed research study regarding preferences for genomic testing.

Aim of the research

To explore the priorities and concerns of people impacted by rare diseases when it comes to genomic testing options.

How the results from this research will be used

The results from this study will be used to help develop a policy tool that groups such as the Medical Services Advisory Committee (MSAC) can use when making future public funding decisions about genomic testing (for example, recommending that a new genomic test be added to the Medicare Benefits Schedule).

About the webinar

The purpose of the webinar is for the research team (see the speaker bios below) to engage with the rare disease community via RVA Partner group/organisation leaders to ensure the study is meaningful and designed appropriately for the Australians living with a rare disease, including families and carers, who will ultimately participate in the study. Researchers will share an overview of the study and invite participants to share their feedback on the study design. The webinar will also provide attendees with the opportunities to learn about preference research methods, which will be used in the planned study. A Q&A session will give people the opportunity to ask any questions they may have about this study.

Webinar details

Date: Wednesday, 22 November 2023

Time: 12pm – 1:30pm (AEDT)

Location: Zoom – register via this link

More than one representative from each RVA Partner group/organisation is welcome to attend the webinar. You can also submit any questions you have for the Q&A session ahead of the webinar by emailing: [email protected].

Note: for those unable to attend live, the webinar will be recorded with the option to provide feedback to the research team via email.

Questions

If you have any questions, please contact RVA’s Research and Evaluation Manager, Falak Helwani, on 0448 505 184 or at [email protected].

Speakers

Dr Falak Helwani – Rare Voices Australia: Host and Q&A Moderator

Falak is a former research scientist with a PhD in molecular cell biology from the University of Queensland and postdoctoral experience in hematopoietic stem cell and bone marrow transplant biology at the Mater Medical Research Institute. She has co-authored several publications and has presented her research both in Australia and overseas. Falak paused her research career to care for her daughter who has a rare congenital heart defect and later learned that her youngest son has a rare auto-inflammatory disease. As RVA’s Research and Evaluation Manager, Falak is committed to ensuring that evidenced-based understanding of rare disease drives advocacy and policy reform.

Nicole Millis – Rare Voices Australia

Nicole was appointed Chief Executive Officer of RVA in June 2016. An experienced social worker, she has both personal and professional experience in the rare disease sector. Nicole has engaged in systemic 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. In 2023, Nicole accepted a health technology assessment appointment to the Enhanced Consumer Engagement Process Co-design Group as a consumer member. 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.

Dr Simon Fifer – Community and Patient Preference Research (CaPPRe)

Dr Simon Fifer is Director of Research at CaPPRe and is on the Advisory committee at Patient Voice Initiative. He is a ‘pracademic’ (practical academic), with a research focus directed at solving real world problems by studying human decision-making using choice-based measurement. In healthcare, this translates to measuring patient preferences and values. Simon has a PhD in Choice modelling from the University of Sydney.

Maya Joshi – Community and Patient Preference Research (CaPPRe)

Maya Joshi is Research Manager at CaPPRe with a background in patient advocacy. Maya is passionate about using preference research to meaningfully integrate patient values into healthcare decision-making – at both an individual and systems level. This includes centring patient voices in treatment discussions with healthcare teams, as well as at a policy level when deciding what treatment options people have access to.

Rare Voices Australia (RVA) invites Queensland-based leaders of RVA Partner groups/organisations to the first-ever Queensland Parliamentary Event dedicated to people living with a rare disease.

This invite-only, drop-in event gives RVA Partner group/organisation leaders the opportunity to interact directly with parliamentarians who stop by over a one-hour period to meet RVA and others who represent people living with a rare disease. There will be no formal speeches to maximise engagement between parliamentarians and attendees.

Event details

Date: Tuesday, 14 November 2023

Time: 1pm to 2pm (AEST)

Location: Parliament House, Queensland

RSVP: Via this form by 5pm (AEST) Tuesday, 7 November 2023

Purpose of the event

This Parliamentary Event is intended to be an initial step towards the establishment of a Queensland Parliamentary Friends of People Living with a Rare Disease. The event will provide elected representatives with the opportunity to gain a better understanding of the common challenges experienced by people living with a rare disease and to meet Queensland-based rare disease group/organisation leaders.

RVA’s strategic aims as the national peak body for Australians living with a rare disease

• Establish a Queensland Parliamentary Friends of People Living with a Rare Disease
• Work with parliamentarians to develop an implementation plan for progressing relevant aspects of the Australian Government’s National Strategic Action Plan for Rare Diseases
• Identify the relevant division within Queensland’s Department of Health responsible for progressing a strategic approach to rare diseases

Maximising your attendance at the event

RVA Partner group/organisation leaders are invited to support the strategic aims of this event and bring information about their own group/organisation to share with parliamentarians. RVA recommends making information available via QR code(s). There will not be any capacity for organisations to bring banners and other display materials.

Invite your local Queensland Member of Parliament

This event is a great opportunity to meet and speak with politicians in Queensland to further highlight rare diseases. Don’t forget to invite your State Member of Parliament if you are attending. If you don’t know who your State Member of Parliament is, visit Queensland Parliament’s official website and the find your electorate page.

Template letter for inviting your local Member of Parliament [Word document]

Important

This invitation is for RVA Partner group/organisation leaders only and RVA is unable to provide any travel support for this event. If you would like to nominate someone in your group/organisation to attend the event besides the person who received the formal invitation RVA has distributed, please email [email protected] with the person’s name, email address and their title. RVA will respond to your request as soon as possible. 

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 (AEDT) Sunday 5 November 2023.

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 (AEDT) Sunday 5 November 2023.

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.