Systemic Advocacy Masterclass Series – Rare Disease Awareness, Education, Support, and Training (RArEST) Project

The Rare Disease Awareness, Education, Support and Training (RArEST) Project’s systemic advocacy stream, led by Macquarie University, is launching a Rare Disease Systemic Advocacy Masterclass Series. The first of six workshops will take place on Thursday, November 10, 2022 (the day before the National Rare Disease Summit) from 1pm to 4:30pm (AEST) at Novotel Sydney Brighton Beach. EOIs close at 5pm AEST on Tuesday 27 September 2022.

The first session is a face-to-face workshop open to those who can attend in person only. The RArEST team is seeking expressions of interest (EOI) from experienced rare disease advocates who wish to participate in this series. Places are strictly limited to 12.

Places will be offered to rare disease organisation advocates who:

  • Can demonstrate effective advocacy that has resulted in change or transformation for their rare disease community.
  • Wish to contribute to the development of a rare disease advocacy community of practice designed to share learning and build the capacity for systemic advocacy in the rare disease community.
  • Have the capacity and availability to participate in and contribute to an additional five masterclass sessions in 2023 (these workshops are likely to be held in a virtual and/or hybrid format).
  • Are willing to, and have the capacity to, share knowledge and expertise to future communities of practice designed to sustainably grow and develop the systemic advocacy capacity of other rare disease organisation leaders.
  • Have demonstrated a collaborative and transparent approach to working with other groups in the sector.
  • Are attending the 2022 National Rare Disease Summit and can attend this session in person.

Note: this invitation is open to Rare Voices Australia (RVA) Partner organisations only.

How to lodge an EOI

If you are interested in completing an EOI, we recommend you do not book flights to the National Rare Disease Summit until the selection process for the series is complete. The RArEST team is aiming to complete the EOI selection process and extend offers to people by Tuesday 11 October. EOIs close at 5pm AEST on Tuesday 27 September 2022.

What is the RArEST Project?

The RArEST Project is a collaboration between RVA, the University of New South Wales, the University of Western Australia and Macquarie University. The project has received funding from the Australian Government.

Please direct any questions you may have about this series to RVA: