On 26 February 2020 the Minister for Health launched the National Strategic Action Plan for Rare Diseases (the Action Plan). The Action Plan outlines a comprehensive, collaborative, and evidence-based approach to achieving the best possible health and wellbeing outcomes for Australians living with a rare disease. Rare Voices Australia (RVA) led the collaborative development of the Action Plan, which details the steps required to remove the barriers facing people living with a rare disease.

Read the Action Plan now

As Australia’s national peak body for Australians living with a rare disease, RVA focuses on broader systemic policy development and change. Click here for a list of RVA’s past advocacy activities, including submissions to a range of Government and departmental enquiries.

Advocacy work

RVA is committed to advocating in ways we believe are likely to be the most effective and in a manner that is solutions-focused, respectful and continues to build and protect RVA’s ongoing relationships with all stakeholders: policy-makers, Governments, Departments of Health, clinicians, practitioners, researchers, academics, industry as well as people living with a rare disease, and their family and carers. At RVA, we know that how we advocate is critical and our Advocacy Strategy reflects this. We engage in a number of advocacy activities including:

  • Providing leadership on broader systemic rare disease issues.
  • Working alongside all key stakeholders, including Federal and State Governments, to oversee the collaborative implementation of the Action Plan.
  • Listening and engaging with key stakeholders to work towards the best health and wellbeing outcomes for Australians living with a rare disease.

Click here for more information about RVA’s COVID-19 advocacy and responses received to date.

Mentorship support

RVA Partner organisations and Australians living with a rare disease are eligible to receive customised Advocacy Strategy guidance and mentorship from RVA as needed. RVA aims to help build the advocacy capacity of rare disease organisations to effectively respond to their specific advocacy needs.

Peak bodies such as RVA have a great responsibility when it comes to advocacy. We must understand the role of different stakeholders and where we can be of influence. Building meaningful relationships with stakeholders takes time and managing these relationships in the long-term is equally as important. RVA is always keen to help RVA Partners to advocate as effectively as possible. Contact RVA for assistance.