About the role
- Work with staff to lead the development and writing of the National Strategic Action Plan for Rare Diseases for submission to the Government,
- Seek input from a wide range of stakeholders through internal and external channels, including patients and carers, clinicians, researchers, policy-makers, governments and industry.
- In consultation with staff and stakeholders, develop policy submissions and position statements relevant to RVA’s scope of work and its Call for a comprehensive National Rare Disease Policy Framework.
- Develop and maintain effective working relationships with key stakeholders around rare disease research and policy development.
- Contribute in a collaborative team to key RVA projects and events such as the biannual Summit and networking/educations events that provides an opportunity for collaboration between RVA and patient group stakeholders.
- Manage all RVA policy documentation to ensure maximum engagement with the key purpose and strategic objectives of RVA.
- Contribute to a positive and effective team focused on improving the lives of Australians living with a rare disease.
About the organisation
Rare Voices Australia is Australia's national non-profit organisation, representing people who live with a rare disease.
- We provide a strong common voice to advocate for rare disease policy reform, as this is essential to improve the lives of the almost 2 million Australians living with a rare disease.
- We provide leadership and advocacy, raise awareness of issues and influence policy, engage all stakeholders and facilitate collaboration.
- Our approach to working with our diverse members and stakeholders is to ensure 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 pitch in when needed, and act with the highest level of integrity and respect for our members and stakeholders. We thrive on achieving gains on the big issues for people living with a rare disease that we care about.
How to apply for this role
Applications not allowed for this job listing.
Please quote in application: Policy & Research Officer via Pro Bono Australia.