WA Department of Health stakeholder consultation focus groups

The Western Australia Department of Health, Office of Population Health Genomics (OPHG) is currently reviewing the supports, services and systems available to West Australians living with rare, genetic and undiagnosed conditions and their families, and how the community navigates these systems. If you live in Western Australia (WA), the OPHG would like to know more about your and your family’s experiences. If your organisation/group has members who are based in WA, please feel free to pass on this invitation to them. See the flyer for the full details.

Stakeholder consultation focus groups


The OPHG is holding a number of stakeholder consultation focus groups for those living in WA with a rare, genetic or undiagnosed condition and/or their families. Your participation will help to shape the future services and system navigation for those living with genetic, rare and undiagnosed conditions across Western Australia.

The details are listed below.

Location: Face to face in Perth CBD (address to be provided) with online video conference options available.
Dates: Participants may choose from a morning or evening session on 2nd, 3rd, 8th or 9th of February.
Why: Community input plays a critical role in how future services are designed to create better outcomes.
RSVP: To learn more or register your interest please email genomics@health.wa.gov.au or call 08 9222 2239.

Participants will be renumerated by the OPHG for their time.

See the flyer for the full details.

RVA is Hiring: Research & Evaluation Officer

Organisation : Rare Voices Australia
Location : Australia (The successful applicant may be based in or near any Australian capital city or major regional centre.)
Work type : Part-time
Profession : Policy & Research
Sector : Other
Salary type : Annual Package
Salary : $80k per annum full-time equivalent pro rata, plus super
Application closing date : 31 Jan, 2021

About the role

The Research and Evaluation Officer will play a key role in facilitating the collaborative implementation of the National Strategic Action Plan for Rare Diseases (the Action Plan), including leading the development of an online digital repository. This role will source and conduct high quality evidence-based research and program evaluation to support RVA’s advocacy, policy development and education activities. This role will also cultivate research partnerships with external organisations. This position would be well suited to an individual who is skilled in strategic research and evaluation, has strong communication skills and who enjoys working collaboratively as part of a team.

About the organisation

Organisation Name : Rare Voices Australia

Rare Voices Australia (RVA) is Australia’s national non profit peak body, representing people who live with a rare disease. RVA is dedicated to working with all stakeholders to drive the best outcomes for Australians living with a rare disease.

  • We provide a strong unified voice to advocate for rare disease policy reform, as this is essential to improving the lives of the estimated two million Australians living with a rare disease.
  • We progress the collaborative implementation of the Action Plan. RVA led the collaborative development of the Action Plan, which was launched in February 2020 by the Australian Government with strong bipartisan support. Developed ‘by the rare disease sector, for the rare disease sector,’ the Action Plan is the first nationally coordinated effort to address rare diseases in Australia.
  • We provide leadership and advocacy, raise awareness of issues and influence policy by engaging with all stakeholders in the rare disease sector and facilitating collaboration.
  • Our collaborative approach to working with our RVA Partners and stakeholders ensures our actions are well considered and well targeted, sustainable, and geared towards achieving a high collective impact.

Our national team is small, collaborative and strategic. We are innovative thinkers who are nimble and proactive. We are comfortable working remotely as our team members are located across Australia. We all pitch in when needed, and act with the highest level of integrity and respect for our RVA Partners and stakeholders. We thrive on achieving progress on the big issues for people living with a rare disease.

How to apply

Position Description : PD Research & Evaluation Officer – January 2021

Forward your application addressing the Selection Criteria, as well as a copy of your CV to Nicole Millis: nicole.millis@rarevoices.org.au by 31st January 2021

Please quote in application: Research & Evaluation Officer

RVA Education Webinar: NDIS Parliamentary Inquiry and Consultation Processes

Rare Voices Australia (RVA) welcomes the opportunity to provide input from a rare disease perspective into changes being made to the National Disability Insurance Scheme (NDIS). RVA will be a lodging a submission into:

RVA has heard many stories of the difficulties those impacted by rare disease have had in terms of eligibility, access and timely response.

In developing our submission for the Parliamentary Inquiry, RVA is seeking input from our RVA Partner organisations. We would like to hear your views and recommendations for the NDIS, as well as your specific experiences. RVA is hosting two 90-minute webinars on Wednesday 3 February:

Webinar 1: 2pm to 3:30pm (AEDT)
Webinar 2: 8pm to 9:30pm (AEDT)  

The content for each webinar will be the same. Choose the session that bests suits you. 

The sessions are designed to be collaborative and interactive discussions that can inform the development of RVA’s submission to the Parliamentary Inquiry, as well as your own organisation’s potential submission. We will discuss:

  • Terms of reference for the Parliamentary Inquiry and guidelines for the NDIA’s access and eligibility policy with independent assessments consultation.
  • Barriers that rare disease families experience in accessing NDIS funding.
  • Ideas for the fairest and most equitable ways to assess eligibility and access requirements from a rare disease perspective.
  • The National Strategic Action Plan for Rare Diseases and how its content relates to access to care and services, including the need for a co-ordinated and integrated approach.
  • Data sources such as The McKell Institute report, Disability and Rare Disease: Towards Person Centred for Australians with Rare Diseases, the Tune Review of the NDIS Act 2013 and international models.

The NDIA’s access and eligibility policy consultation closes on 23 February and details can be found here.

The closing date for the Parliamentary Inquiry is 31 March and the terms of reference can be found here.

To register for this webinar please email RVA’s Stakeholder Engagement and Education Officer, Louise Healy, noting which session you’d like to attend: education@rarevoices.org.au

If your rare disease organisation/group is not an RVA Partner and you would like to attend the webinar, you can apply to become an RVA Partner. Click here for more information.

RVA Education: National Disability Insurance Agency Public Consultations Guide

The National Disability Insurance Agency (NDIA) would like to hear from you regarding the changes they are making to the NDIS. The NDIA has released three public consultation papers and one report:

1. Consultation paper: access and eligibility policy for independent assessments
2. Consultation paper: planning policy for personalised budgets and plan flexibility
3. Consultation paper: supporting young children and their families early, to reach their full potential 
4. The Early Childhood Early Intervention Reset Project consultation report

Submissions for each public consultation paper are open until 10am ADST Tuesday 23 February 2021. Click here to access the NDIA’s consultation papers and report. RVA has put together this education resource to assist people with the NDIA public consultations.

RVA Poster Presentation for HGSA Virtual Conference 2020

Rare Voices Australia (RVA) attended the Human Genetics Society of Australasia’s (HGSA) Virtual Conference on 24 and 25 November 2020. RVA was pleased to present our poster, The National Strategic Action Plan for Rare Diseases: A Collaborative Multi-stakeholder Approach to Effective Rare Disease Policy Reform. Click here to view RVA’s poster.

Hope on the Horizon

Imagine your child is showing symptoms that confound doctors. 

You see expert after expert, getting test after test. 

Perhaps you’re even scoffed at along the way, however, you persevere because your instincts as a parent are screaming at you that something is not right with your child and you know early interventions produce the best outcomes.

Rare Voices Australia’s (RVA) CEO, Nicole Millis, and Deputy Chair and Director, Kane Blackman, were interviewed by The West Australian.

Click here to read the full article.

Federal Budget 2020-21 and Rare Disease

On Tuesday evening, Treasurer Josh Frydenberg, announced the Morrison Government’s 2020-21 Federal Budget. As the peak body for Australians living with a rare disease, Rare Voices Australia (RVA) attended the Department of Health’s Portfolio Briefing webinar presentation and Q&A with the Hon Greg Hunt MP (Minister for Health); Senator the Hon Richard Colbeck (Minister for Aged Care and Senior Australians, Minister for Youth and Sport); and the Hon Mark Coulton MP (Minister for Regional Health, Regional Communications and Local Government). The session was facilitated by Professor Brendan Murphy, the Secretary of the Department of Health.

RVA has highlighted areas of the Federal Budget 2020-21 that we believe are most relevant to the rare disease sector. Click here to read RVA’s full statement.