About the organisation
Organisation Name : Rare Voices Australia
Rare Voices Australia (RVA) is Australia's national non-profit peak body, representing Australians who live with a rare disease. RVA is dedicated to working with all key stakeholders in the rare disease sector 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 National Strategic Action Plan for Rare Diseases (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 key stakeholders in the rare disease sector and facilitating collaboration.
- Our collaborative approach to working with our RVA Partners (rare disease organisations) and stakeholders ensures our actions are well considered and well targeted, sustainable and geared towards achieving a high collective impact.
- Our growing 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.
About the role
- Research and develop customised, evidence-based information about rare diseases for all stakeholders across the rare disease community for the Rare Awareness Rare Education (RARE) Portal. Key stakeholders include people living with a rare disease, advocates, key peak bodies, clinicians, researchers, governments and industry.
- Identify reliable resources (peer reviewed journal articles and grey literature) and expertise to generate accurate and relevant content for the RARE Portal.
- Engage with rare disease stakeholders to gather relevant information and resources that meet the needs of all rare disease stakeholders, including people living with a rare disease, carers, researchers, clinicians and allied health professionals.
- Collate information from a range of reliable resources and stakeholders to create information and resources about individual rare diseases that captures all viewpoints.
- Write simple, concise, engaging, customised and evidence-based information for the RARE Portal that is tailored to Australians living with a rare disease and all rare disease stakeholders.
- Evaluate and review information and resources housed on the RARE Portal.
- Contribute to RVA’s community and stakeholder engagement.
- Contribute to identifying unmet needs of Australians living with a rare disease and priority setting.
- Work with RVA staff to contribute to the full range of RVA’s work which includes advocacy and policy, education, research, communications and RVA events (e.g. the National Rare Disease Summit and Parliamentary Events).
How to apply
Position Description : PD - Resources and Information Officer
Applications not allowed for this job listing.
Please quote in application: Resources and Information Officer via Pro Bono Australia.
Sector: #Other
