Rare Disease Day will be marked on Sunday 28 February. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on people’s lives.
A number of landmarks around Australia will be illuminated to mark Rare Disease Day (click here to see the full list).
Rare Voices Australia (RVA) has put together a Media Pack for any media activity you or your organisation would like to engage in ahead of Rare Disease Day.
Click here to access the media release template [Word].
Click here to download a one-pager with more information about rare diseases, Rare Disease Day and RVA [PDF].
You can also direct any media looking for more information about rare diseases here. All Rare Disease Day assets can be downloaded from the official Rare Disease Day website.
RVA Partners that would like assistance with any planned media activities are encouraged to reach out to RVA directly: firstname.lastname@example.org
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: email@example.com by 31st January 2021
Please quote in application: Research & Evaluation Officer
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: firstname.lastname@example.org
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.
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.
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.
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.
On 28 August 2020, the Federal Government announced its response to the review of the National Disability Insurance Scheme (NDIS) Act 2013 conducted by former senior public servant, David Tune. The Tune Review made 29 recommendations to improve the way the NDIS operates. Rare Voices Australia (RVA) has reviewed the information the Government released on 28 August, including its formal response. RVA has released a Position Statement addressing the Government’s response following consultation with our RVA Partner organisations via our closed Facebook group — this approach was undertaken due to the time critical nature of this issue.
Click here to read RVA’s Position Statement.
RVA is in the process of writing formal letters to the Minister for the NDIS, Hon Stuart Robert MP, and the Shadow Minister for the NDIS, Hon Bill Shorten MP. These letters will address aspects of the Government’s response that RVA welcomes and areas that are concerning for the rare disease community. RVA has successfully communicated previously with both Mr Robert’s and Mr Shorten’s office regarding the NDIS and rare diseases and we look forward to continuing these ongoing discussions moving forward.
As you may be aware, the House of Representatives Standing Committee on Health, Aged Care and Sport (the Committee), Chaired by Trent Zimmermann MP and Dr Mike Freelander MP, has commenced a Parliamentary Inquiry into new drugs and novel medical technologies. The inquiry will include a particular focus on access to the treatment of rare diseases and conditions where there is high and unmet clinical need. The Committee is inviting organisations and individuals to make a submission addressing the terms of reference by Tuesday, 13 October 2020.
Guided by the National Strategic Action Plan for Rare Diseases (the Action Plan), Rare Voices Australia (RVA) has put together a suite of support materials to highlight the recommendations that have strong support for implementation in relation to the Terms of Reference (TOR) of the inquiry. We’ve included a guide for each TOR to highlight some of the common issues for the rare disease community – this is not an exhaustive list. These guides include excerpts from the Action Plan that cover recommendations in relation to the relevant TOR. Click here to access the guide for each TOR.
RVA Partners are encouraged to reach out to Louise Healy, RVA’s Stakeholder Engagement and Education Officer for support on 0455 053 877 or via email: email@example.com
Rare Voices Australia (RVA) has released this statement today, which has been developed in conjunction with our Scientific and Medical Advisory Committee following the COVID-19 press release issued by EURORDIS on 31 March 2020.
RVA is calling for the urgent development and use of critical care guidelines for people living with a rare disease to inform Australian hospitals and clinicians during the COVID-19 pandemic.
The statement has been sent to all State Chief Health Officers and will be distributed to all of RVA’s rare disease contacts at a state level, the Chief Medical Officer for the Australian Government, the Hon Greg Hunt MP’s office, the National COVID-19 Clinical Evidence Taskforce and other strategic partners.
RVA will seek to liaise accordingly to facilitate the development of any COVID-19 work that impacts the rare disease community.
As the COVID-19 pandemic continues, the team at Rare Voices Australia (RVA) shares our best wishes to those impacted personally and to the wider community during these uncertain times. We feel now is a good opportunity to distribute the below information.
Our Rare Disease Community
Members of our rare disease community may be particularly vulnerable to COVID-19. The team at RVA encourages the rare disease community to remain updated and aware of the often-changing response to COVID-19.
Click here to read RVA’s full message regarding COVID-19.