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.

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:

First Ever Global Consensus Clinical Care Guidelines for Sanfilippo Syndrome

The first-ever global consensus clinical care guidelines (guidelines) for Sanfilippo Syndrome have been published. RVA Partner Sanfilippo Children’s Foundation (Australia) has collaborated with Cure Sanfilippo Foundation (United States of America), people living with Sanfilippo Syndrome and over 100 clinicians globally to develop and publish the guidelines.

Establishing consensus among medical professionals with expertise in the care of individuals with Sanfilippo on recommended care guidelines is a key step to elevating the care and support for children around the world who are living with Sanfilippo Syndrome.

How were the guidelines developed?

The guidelines were established through a multistage process to arrive at consensus recommendations, with input from more than 100 clinicians around the world with a range of specialist expertise, who have experience in the care of individuals with Sanfilippo Syndrome. Lived experience was integrated through participation of the collaborating Sanfilippo advocacy organisations.

What’s in the guidelines?

Accessible to anyone providing medical care, rehabilitative care, or support services for individuals with Sanfilippo Syndrome globally, the guidelines provide evidence-based, expert-led recommendations and guidance on Sanfilippo Syndrome-specific care management and monitoring of disease-related changes. Additionally, the guidelines are a practical resource for families to become well-informed advocates and can be shared with local care teams, who may not have previous experience with this rare disease. 

Topics addressed in the guidelines include: 

  • Symptoms that should raise suspicion for the diagnosis of Sanfilippo Syndrome
  • Methods of establishing the diagnosis
  • Evaluating, monitoring and managing neurological, gastrointestinal, airway, musculoskeletal and the many other complications that may develop
  • Special focus on the evaluation of unexplained pain and distress
  • Rehabilitative therapies
  • Support services 

Download a copy of the guidelines here.

Visit the Sanfilippo Children’s Foundation website for more information about the guidelines.

What are the next steps?

Cure Sanfilippo Foundation and Sanfilippo Children’s Foundation, in collaboration with international Sanfilippo Syndrome organisations, are developing a streamlined version of the guidelines for easy reference and access in multiple languages.

Rare Voices Australia Statement: Budget October 2022-23

On Tuesday, 25 October 2022 the Hon Dr Jim Chalmers MP (Treasurer of Australia) announced the Albanese Government’s October 2022-23 Federal Budget. In a media release, the Hon Mark Butler MP, Minister for Health and Aged Care, stated, “This is a Budget for the health of every Australian.”

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 with Minister Butler; the Hon Anika Wells MP (Minister for Aged Care, Minister for Sport); 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, Assistant Minister for Rural and Regional Health); and Senator the Hon Malarndirri McCarthy (Assistant Minister for Indigenous Australians, Assistant Minister for Indigenous Health). The session was facilitated by Prof Brendan Murphy AC, Secretary of the Department of Health and Aged Care.

Click here to read RVA’s Full Statement where we have highlighted some areas of the Budget we believe are most relevant to Australians living with a rare disease and the rare disease sector.

Parliamentary Event: Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia

Rare Voices Australia’s (RVA) Chief Executive Officer, Nicole Millis, was pleased to attend a Parliamentary Event in Western Australia (WA) on 19 October hosted by the Parliamentary Friends of People with Rare and Undiagnosed Diseases in WA (the Parliamentary Friends Group). Clin/Prof Gareth Baynam, who is a member of RVA’s Scientific and Medical Advisory Committee (SMAC), spoke at the event. RVA’s Deputy Chair, Kane Blackman, Dr Kristen Nowak (SMAC) and RVA Ambassador, Andrew Bannister, also attended.

The Parliamentary Event marked the one-year anniversary of the official launch of WA’s Parliamentary Friends Group. The event gave clinical and support organisations within the rare disease community the opportunity to showcase who they are and what they do to Members of Parliament to increase awareness of rare diseases. Thank you to the Members of Parliament who attended, including the Premier, the Hon Mark McGowan BA LLB MLA.

RVA also thanks Co-Convenors of the Parliamentary Friends Group, the Hon Matthew Swinbourn MLC, the Hon Donna Faragher MLC and the Hon Stephen Pratt MLC, for their ongoing support of the rare disease community.

Image credit: Ammon Creative

Sector-Wide Evaluation: National Strategic Action Plan for Rare Diseases Implementation

The Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) was launched in February 2020, over two years ago. Since that time, the rare disease sector has been collaboratively progressing implementation of the Action Plan. To gauge how far we have come, Rare Voices Australia (RVA) is leading an evaluation of the sectors’ collective efforts. The aim of this evaluation is not only to map what is being done and what has been achieved, but also to highlight any gaps in the sector’s progress and any areas where we can encourage greater collaboration and prevent duplication.  

To encourage cross-sector participation in Action Plan evaluation, RVA have chosen a simple tool—Google Jamboards—where each stakeholder group can share current, past or forthcoming projects, initiatives, tools, resources, networks and processes. These Jamboards are active currently and will remain open until 17 October 2022. If you have progressed implementation of the Action Plan but have not received an email with information and a link to a Jamboard, please contact Falak Helwani, RVA’s Research and Evaluation Manager at research@rarevoices.org.au or call 0448 505 184.  

The results of this mapping exercise will demonstrate how far the sector has come and what is left to do. The results will be shared at the 2022 National Rare Disease Summit (Summit) in November and inform Summit Workshops (for in-person Summit attendees only). During these small group workshops there will be an opportunity to discuss the most urgent gaps in Action Plan implementation and who could or should be responsible for furthering progress in those specific gap areas. Participants will be asked to share any activities that were not captured via the Jamboards and encouraged to identify any obvious duplication or risk for duplicated efforts. RVA hopes this exercise will facilitate increased collaboration among stakeholders with similar objectives (if any) and guide next steps to fill the gaps for full implementation of the Action Plan.

RVA is looking forward to the outcomes of this work and to showcasing the collective efforts of the rare disease sector. Thank you to those who have already contributed to this exercise. Your involvement is appreciated.

For more information or if you have any questions about this work, please contact Falak Helwani at research@rarevoices.org.au or call 0448 505 184.

Rare Voices Australia Parliamentary Event – 5 September 2022

Rare Voices Australia (RVA) thanks everyone who attended our Parliamentary Event in Canberra today hosted by the Chair of the Standing Committee on Health, Aged Care and Sport, Dr Mike Freelander MP. We thank Dr Freelander, Member for Macarthur and Co-Chair of the Parliamentary Friends of Australians Living with Rare Diseases, and the following Parliamentarians who spoke at the event:

  • Hon Ged Kearney MP, Assistant Minister for Health and Aged Care
  • Senator the Hon Anne Ruston, Shadow Minister for Health and Aged Care
  • Dr Monique Ryan, Member for Kooyong and Co-Chair, Parliamentary Friends of Australians Living with Rare Diseases

RVA has been working with Dr Freelander to re-establish the Parliamentary Friends of Australians Living with Rare Diseases, which both he and Dr Ryan referred to at today’s event.

Special thanks to our RVA Ambassadors and the RVA Partner organisation leaders who also joined us. The Parliamentary Event provided an opportunity for the rare disease sector to continue fostering strong relationships with all political parties and to welcome newly elected members of the 47th Federal Parliament, while introducing them to key rare disease issues.

In addition to celebrating RVA’s 10th anniversary, the event demonstrated the need for the entire rare disease sector to collaborate to ensure the ongoing successful implementation of the National Strategic Action Plan for Rare Diseases.

RVA Welcomes Equity of Access for Australians Living with Phenylketonuria (PKU)

RVA welcomes the announcement that the Pharmaceutical Benefits Scheme (PBS) listed treatment for Phenylketonuria (PKU) will now be accessible to all Australians living with PKU who are responsive to treatment. RVA provided a consumer comment regarding this treatment that, in line with the National Strategic Action Plan for Rare Diseases (the Action Plan), highlights the importance of equitable access to treatments for adults who have lifelong conditions.

Congratulations to RVA Partners, the Metabolic Dietary Disorders Association (MDDA) and PKU Association of NSW, and their communities for advocating for the best outcomes for Australians living with PKU.

RVA also acknowledges the disappointment that the other treatment for PKU considered for listing on the PBS by the Pharmaceutical Benefits Advisory Committee (PBAC) at the July 2022 meeting was rejected. RVA provided a consumer comment for this treatment that highlighted the importance of new and innovative therapies becoming available to Australians living with a rare condition as soon as possible, which aligns with the Action Plan.

RVA provides consumer comments to the PBAC regarding systemic issues for Australia’s rare disease community.