About the Role
- Develop and implement an engagement strategy for rare disease patient organisations to enhance RVA’s ability to understand and respond to the needs of these organisations and increase the number of financial RVA partners.
- Lead the implementation of a biannual RVA Summit that is purposeful and engages all stakeholder groups (patient groups, scientific and medical community, pharma and government).
- Lead the implementation of a biannual patient education and networking events that provides an opportunity for collaboration between RVA and patient group stakeholders.
- Manage all RVA communications collateral (website, brochures, strategy documents etc) to ensure maximum engagement with the key purpose and strategic objectives of RVA.
- Work with social media officer to ensure message alignment across all channels.
- Contribute to a positive and effective team focussed 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 health system reform, as this is essential to improve the lives of the 1.5 million plus Australians who are affected by 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.
Apply for this Job
For details concerning this role, please contact
Executive Officer - Nicole Millis
Email : email@example.com
Applications not allowed for this job listing.
Please quote in application: Stakeholder Engagement and Communications Officer via Pro Bono Australia.