RVA Partner Opportunity: Aboriginal and Torres Strait Islander Mental Health First Aid Training

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.

What is involved and what commitment am I making?

Online Aboriginal and Torres Strait Islander MHFA programs consist of 14 hours of learning. Search the Mental Health First Aid Course Calendar to see the dates and times available.

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: education@rarevoices.org.au  

RVA Partner Opportunity: Youth Mental Health First Aid Training

Rare Voices Australia (RVA) is pleased to continue our work in 2023 with Mental Health First Aid (MHFA) Australia to offer RVA Partner organisation representatives the opportunity to participate in Youth MHFA training and Aboriginal and Torres Strait Islander MHFA training. 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.

What is involved and what commitment am I making?

You will be required to attend three online Zoom sessions in addition to completing the online learning component of the course. The dates and times for the three online sessions are:

  • Wednesday, 15 March 2023 from 10:30am–1:30pm (AEDT)
  • Wednesday, 22 March 2023 from 10:30am–1:30pm (AEDT)
  • Wednesday, 29 March 2023 from 10:30am–1:30pm (AEDT)

It is expected that those volunteering to complete the Youth MHFA training are willing and have the capacity to provide MHFA support to youth in their rare disease 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 the Youth MHFA training

This training educates participants about how to assist adolescents who are developing a mental health problem, experiencing a worsening of a mental health problem or are in a mental health crisis. Youth MHFA is for adults who work, live or care for adolescents such as teachers, school support staff, parents, sports coaches, community group leaders and youth workers. Read the course flyer.

Youth MHFA provides an overview of mental illnesses, risk factors, prevalence, and impact before taking a much closer look at a selection 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 Youth 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 do not have current MHFA accreditation

What is the cost?

RVA will cover the costs of the Youth MHFA course, which will be delivered in an online format. This includes a hard copy of the MHFA manual that will be mailed to you.

How does our organisation lodge our interest in participating?

If your proposed participant would like to participate in the Youth MHFA training, please complete this form.

Please note: if the applicant is confirmed as a participant, the contact information provided in the form above will be provided to the Youth MHFA course facilitator (Cate Clark) for the program so they can liaise directly with attendees.

Meet Your Facilitator Cate Clark

The course will be facilitated by MHFA instructor Cate Clark. Cate is a highly skilled Credential Mental Health Nurse with extensive experience across all aspects of mental health in both the public and private sectors. Over her 40 years as a practitioner, she has developed an approach focussed on trauma-informed care and recovery-based interventions. Cate is a creative person with a passion for mental health and a genuine interest in people. She has a particular interest in working with families and carers and in capacity building in communities. Read more about Cate and her role as an MHFA instructor.

2023 Sawatzky Cup Raises Over $11,000 for Rare Voices Australia and Australians Living With a Rare Disease

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

Congratulations to Rare Voices Australia Scientific and Medical Advisory Committee Member Associate Professor Paul Lacaze!

Associate Professor Paul Lacaze, Head of Public Health and Genomics at Monash University, and member of Rare Voices Australia’s Scientific and Medical Advisory Committee (SMAC), was recently awarded $3 million through the Medical Research Futures Fund – Genomics Health Futures Mission. His research, a DNA Screen national pilot study, has received national media attention, with high levels of interest from the general community. The project will offer preventative DNA screening to healthy young adults to look for genetic variants that increase their risk to particular rare hereditary diseases.

Associate Professor Lacaze’s research aligns with several key Priorities and Actions in the National Strategic Action Plan for Rare Diseases. In particular, Action 2.2.1 in the Care and Support Pillar, ‘Ensure all Australians have equitable access to a range of diagnostic tools and tests, providing the best chance of early and accurate diagnosis’. Investment in rare disease research and prevention measures are also key areas of importance highlighted in the Action Plan.

In December 2022, Professor Lacaze’s work was recognised in the Department of Health news. You can read the full article here.

Rare Voices Australia Is Hiring: Communications and Engagement Officer

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 13th February 2023 at 5.00pm AEDT.

Download the full position description.

Rare Voices Australia Congratulates Childhood Dementia Initiative on the Recent Launch of the Childhood Dementia Knowledgebase!

Rare Voices Australia (RVA) Partner, Childhood Dementia Initiative (CDI), recently launched the Childhood Dementia Knowledgebase (the Knowledgebase)—a growing collection of rich data about the 100+ conditions that cause childhood dementia. The Knowledgebase is a relational database providing key information, including incidence, prevalence, life expectancy, age of onset and diagnosis, genetic cause, signs and symptoms and more!  Clinicians and researchers can interrogate the Knowledgebase for their research and plan new and innovative research projects. In parallel to the development of the Knowledgebase, CDI brought together health and medical researchers from around the world to drive research and increase opportunities for collaboration through their Childhood Dementia Research Alliance (the Alliance). The Alliance has helped shape the Knowledgebase and, as prime users of this resource, will continue to contribute to its future expansion and improvements.

Limited data is a common feature of rare diseases, often resulting in high uncertainly, which impacts every part of people’s lives. The Knowledgebase is driving the collection of much needed data relating to a broad range of life-limiting rare diseases—data that can support the development of new knowledge and treatments in an area of high unmet need. This initiative contributes to the implementation of key areas in the National Strategic Action Plan for Rare Diseases (the Action Plan). It directly addresses Priority 3.1 in the Research and Data Pillar, ‘Enable coordinated and collaborative data collection to facilitate the monitoring and cumulative knowledge of rare diseases, informing care management, research and health system planning’. The high quality, comprehensive collection and effective use of rare disease data is also one of the critical enablers of the Action Plan.

RVA is excited in anticipation of the impact the Knowledgebase will have on people living with childhood dementia both in Australia and overseas.

The Childhood Dementia Knowledgebase is now available as a public resource. Register for access to the Childhood Dementia Knowledgebase here.

Expressions of Interest: Consumer Representatives With Lived Experience of a Genetic Condition and/or the Genetic Services of Western Australia

Western Australia’s (WA) Department of Health recently released the WA Genomics Strategy 2022-2032 (the Genomics Strategy), which outlines a co-ordinated approach to translate genomics and enable precision medicine and precision public health for WA’s health system.

As part of the implementation of the Genomics Strategy, the WA Department of Health is seeking expressions of interest (EOI) to recruit consumer representatives with lived experience of a genetic condition and/or the Genetic Services of Western Australia (GSWA) for two groups:

  • WA Genomics Strategy Implementation Committee
  • GSWA Clinical Service Plan Co-Design Team and Working Group

How to lodge an EOI

Consumer representatives can lodge their EOI via this form. The EOI closes on Friday, 27 January 2023.

More information

Visit this page for more information.

Refreshed National Medicines Policy (NMP) Delivered to the Australian Government

The Hon Mark Butler MP, Minister for Health and Aged Care, has announced the updated National Medicines Policy (NMP). The refreshed NMP is available on the Department of Health and Aged Care’s website.

RVA is currently reviewing the refreshed NMP in detail and what it may mean for Australians living with a rare disease.

As the national peak body for Australians living with a rare disease, RVA has been actively involved in the NMP Review.

RVA has contributed to the NMP Review to date in several ways, including:

Reflections From the 2022 Annual Scientific Meeting for the Human Genetics Society of Australasia (HGSA)

Held from 24-27 November 2022, the 45th Annual Scientific Meeting for the Human Genetics Society of Australasia (HGSA) attracted delegates representing various stakeholder groups from across Australia and around the world. The theme, Life Languages: Ancient Stories, New Conversations emphasised recent developments in genetics and genomics, with a diverse range of exceptional speakers. Plenary sessions and panel discussions covered areas including increasing diversity in rare disease research, Indigenous-led equitable access to genetic testing, data sharing and Indigenous data sovereignty, genomics research and precision health, genomics in newborn screening and novel gene therapies for rare disease. Updates were provided on the outcomes of McKenzie’s Mission and the Acute Care Genomics Program and, for the first time, the Sutherland Lecture was delivered by a genetic counsellor – RVA congratulates A/Prof Jodie Ingles, who was a speaker at the 2022 National Rare Disease Summit, on this prestigious honour.

Newborn Bloodspot Screening

Rare Voices Australia (RVA) was pleased to have two oral presentation abstracts accepted for the meeting. Louise Healy, RVA’s Education and Advocacy Manager, spoke at one of the Australasian Society for Inborn Errors of Metabolism Special Interest Group (ASIEM-SIG) sessions about The Changing Face of Newborn Screening – A Rare Disease Sector Forum hosted by RVA on 16 June 2022. This session brought together researchers recently awarded funding through the Medical Research Futures Fund, Genomics Health Futures Mission (Stream 2) grants (MRFF-GHFM grants), focused on research into genomic newborn screening (gNBS). RVA is a research partner on four of these projects.

With support from Australian Genomics, the recipients of these MRFF-GHFM grants have come together to form the GenSCAN Consortium (GenSCAN). GenSCAN is led by A/Prof Michael Gabbett from Queensland University of Technology’s Centre for Genomics and Personalised Health.  

The purpose of GenSCAN is to provide a collaborative forum for those involved in advancing the interrogation of genomics into NBS programs in Australia. The core objective of GenSCAN is to allow members to collaborate to learn from each other’s research projects and maximise the outputs of the MRFF-GHFM grants. As the expertise of the membership grows, GenSCAN will apply its exponential knowledge in gNBS to provide independent advice on issues emerging nationally and internationally in the area of gNBS. Hear from and learn about these projects directly from the lead researchers.

Rare Disease Workforce

Dr Falak Helwani, RVA’s Research and Evaluation Manger, also spoke in an ASIEM SIG session about the Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia and the National Strategy for Australia’s Rare Metabolic Workforce, which will be released in 2023. During this session, Dr Kris Elvidge from RVA Partner, Childhood Dementia Initiative (CDI), delivered a moving presentation on the impact of childhood dementia. This freely accessible PowerPoint presentation is part of a suite of resources created by CDI with funding from the Australian Government to raise awareness of childhood dementia among healthcare professionals. Several RVA Partners also attended the meeting.

RVA would like to thank the organisers of the meeting for the opportunity to share our work progressing the collaborative implementation of the National Strategic Action Plan for Rare Diseases and congratulate HGSA and everyone who contributed on a fantastic event.

Recap: 2022 National Rare Disease Summit

Thank you to everyone who joined us in-person and virtually at Rare Voices Australia’s (RVA) 2022 National Rare Disease Summit (the Summit) on 11 and 12 November.

This was RVA’s first face-to-face Summit since 2018 due to COVID-19. The theme was, From Vision to Action: Celebrating 10 Years of Rare Disease Advocacy and Shaping the Next Decade. It was a pleasure to bring together key rare disease stakeholders to create a rare disease roadmap for the next 10 years, focusing on the National Strategic Action Plan for Rare Diseases.

RVA’s Chair, Joanna Betteridge, delivered a summary of the Summit to conclude the two-day event. We have transcribed Joanna’s summary here.

RVA also thanks those who joined us at our Gala Event on Friday evening to celebrate RVA’s 10th anniversary and 10 years of rare disease advocacy that influences policy and transforms lives. Thank you to our speakers and workshop facilitators who helped to make the Summit a success. RVA also acknowledges our RVA Ambassadors who so wonderfully opened the Summit by sharing their personal stories, which framed the event.

Special thanks to the Hon Mark Butler MP, Minister for Health and Aged Care, and Senator the Hon Anne Ruston, Shadow Minister for Health and Aged Care, for pre-recording video messages for the Summit. We also thank Dr Mike Freelander MP, Member for Macarthur; Chair of the Standing Committee on Health, Aged Care and Sport; and Co-Chair of the Parliamentary Friends of Australians Living with Rare Diseases for joining us in person.

In his video, Minister Butler launched the ‘Public Consultation Paper on the Newborn Bloodspot Screening Expansion’ (the Consultation Paper). RVA welcomes the Government’s consultation with stakeholders and will be responding to the Consultation Paper as the national peak body for Australians living with a rare disease. The Consultation Paper is available via the Government’s Consultation Hub until 12 December 2022. RVA has developed a resource to provide RVA Partner organisations, and the broader rare disease sector, with prompts that may assist in the development of a submission. Click here to read more and download the resource.

Feedback From Attendees

“I just left with such a buzz and so much joy. I can’t fault it. It was tiring and overwhelming but so fabulous.” – RVA Ambassador

“As my first time attending, I enjoyed all aspects of the Summit. The ambassadors’ personal stories were incredibly powerful and emphasised why RVA is so vital for the rare disease community.” – RVA Partner

“[The] Whole meeting was excellent as well as the networking. Ambassador stories give the purpose to RVA policies.” – Clinician

“This was honestly one of the best conferences I have been to with a good mix of presentations, Q&A and highly interactive workshops. The Summit was also the perfect size—not too big and not too small. Large enough to have a diverse set of attendees but small enough that you had the opportunity to cross paths with many others.” – Researcher

“It [the Action Plan] now does not sit as a document but has had life through ideas breathed into it.” – Industry

Next Steps

RVA is currently putting together a summary of the workshop reports backs, which will be shared with Summit attendees. All stakeholders who attended the Summit participated and contributed to the workshop sessions. We anticipate the summary will be distributed in early 2023.