In 2022, Rare Voices Australia (RVA) is celebrating 10 years of rare disease advocacy. Thank you to everyone who contributed to RVA’s work over the last decade. From former RVA Board Directors and Scientific and Medical Advisory Committee members to RVA Partners, former staff and all stakeholders, we acknowledge your ongoing support. While much work still needs to be done to achieve the best possible outcomes for Australians living with a rare disease, we are incredibly proud of RVA’s work and achievements to date.
10th Anniversary Ambassador Program
RVA will be unveiling several initiatives throughout the year to celebrate this milestone, including RVA’s 10th Anniversary Ambassador Program (the Ambassador Program). The overarching theme of the Ambassador Program is: Illuminating People Living with a Rare Disease. The Ambassador Program will provide people living with a rare disease (which includes carers and families) and those with professional experience of rare diseases, with the opportunity to become an official RVA Ambassador.
We are currently seeking expressions of interest (EOIs) from those interested. We are looking for 10 ambassadors for our 2022 Ambassador Program. Before applying, please read the below information to see if you are a suitable candidate.
- Lived or professional experience of rare diseases
- Demonstrated use of personal network and platforms to advocate for the best outcomes for the broader rare disease community
- A demonstrated supporter of RVA
- Willing to review and consider signing RVA’s Ambassador Agreement, which can be provided on request to those interested
- Aligned with RVA’s ‘ways of working’ as an RVA Ambassador, which are outlined below
We are person-centred
We want the outcomes that are best for each person as an individual. We will be driven by the needs of each person and by what works best for them. We won’t impose our assumptions on people.
We will actively build and maintain partnerships
We are the voice of the sector, magnifying the voices of all stakeholders that share our goals. We recognise that achieving the transformation we want to see in Australia will require us working in partnership with stakeholders.
We aim for a unified voice
We recognise that without a unified voice, the rare disease sector cannot be successful in achieving the support for people living with a rare disease that we need. As a result, we will prioritise consultation and conversation within the sector to ensure that our voice to policymakers and the broader community is as unified as possible.
We work for equity of access and participation
We believe that equity of access and participation is vital for all people living with a rare disease in Australia. In our initiatives, we will ensure that equity is a key factor in our planning and design. And in our advocacy, the principles of equity will be foremost in our messaging.
We will equip and empower
We aim to equip and empower organisations and people to help them advocate and work for themselves.
We are solutions and results oriented
We want to see results for people living with a rare disease in Australia. We are not going to be bound to theoretical models. We will adopt what works and will test our initiatives against the results they deliver.
We are credible
We recognise that our effectiveness is only as good as our credibility and trustworthiness. We will ensure that all of our actions and words build our credibility, rather than erode it. We recognise that trust takes a long time to build but can be quickly lost.
We will adopt a systemic focus
We are uniquely positioned to engage in systemic advocacy. Effective reform to systems and processes must be prioritised to reduce individuals and groups repeatedly facing common challenges. This is vital to achieving sustainable change at scale.
RVA Ambassadors will have the opportunity to:
- Share their personal story, which will be featured as a written article on RVA’s website. We will also invite ambassadors to film a short video to complement their written story. Each personal story will also be promoted in an edition of our monthly eNewsletter and RVA’s social media channels.
- Send a copy of the National Strategic Action Plan for Rare Diseases (the Action Plan),to their local Federal and State Members of Parliament (MPs) as an official RVA Ambassador. Ambassadors are invited to organise a meeting with their local MPs to speak about their personal experience of living with a rare disease and rare diseases in general.
- Attend RVA events in 2022 in a volunteer capacity, where appropriate.
- Use their networks (e.g. social media, newsletter databases etc.) to cross promote RVA’s work.
- Contribute to relevant media stories from the perspective of an individual living with a rare disease or as a professional who has worked with rare diseases.
All RVA Ambassadors will receive a Welcome Pack. RVA will also support each ambassador in their role as needed.
10th Anniversary Ambassador Program Welcome Pack
- A brief introduction to RVA and how we work, alongside training as required
- Access to RVA’s Online Education Portal
- One hard copy of the Action Plan and complementary communications materials
- One RVA branded hat
Interested in becoming an official RVA Ambassador? Please complete the EOI below and a member of our team will be in touch shortly.
Please direct any questions regarding RVA’s 10th Anniversary Ambassador Program to: firstname.lastname@example.org
EOIs close 15 March 2022.