Rare Disease Day 2023

Rare Disease Day 2023 – Join your community!

Join the Genetic Support Network of Victoria (GSNV) to celebrate Rare Disease Day 2023. Whether you’re living with a genetic, undiagnosed or rare condition, or you support someone who is, you’re invited to join us for two special events on Tuesday, 28 February.

“Nothing about us, without us” – explore the power of networks and alliances as a mechanism of collaboration

In 2023 GSNV will be highlighting how co-creation of a coordinated movement is essential to increasing equity for people living with rare conditions and their families.

For people living with a rare disease equity means social opportunity, non-discrimination in education and work, and equitable access to health, social care, diagnosis and treatment. Harnessing the collaborative power of the rare disease community inclusive is the gateway to change.

This Rare Disease Day we want to bring the community together to discuss how we can build a stronger alliance, to stem the inequality and isolation of ‘living rare’. Together, we’re going to build a grass-roots initiative from the community, for the community, that leaves no-one behind.

Will you join us?

This year our event will focus on “Nothing about us, without us” where we plan to explore the power of networks and alliances as a mechanism of collaboration. The day will commence with a hybrid symposium and finish with a face to face workshop expanding on the morning’s themes.

Attendance can be to both events or one  – chose your tickets based on your availability.

Event 1: Hybrid Symposium

Location: The Commons South Yarra OR Online  

Keynote speaker: Richard Vines, Co-Founder and Chief Executive of Rare Cancers Australia

Hear the story of the National Oncology Alliance, which has been successful in significantly elevating the patient voice in the Australian health care system. This will be followed by other key rare disease community speakers.

Event 2: Workshop
Location: The Commons, South Yarra, Melbourne

Join us for a face-to-face, facilitated discussion, as we start the community consultation process for our new alliance.

From 1pm we will present a round table discussion session that will be the basis of a community consultation process for the co-creation of a grass roots collaboration. This event is a face to face event in Melbourne.

This creative, and dynamic session will explore key components in the design process including:

+ Funding models

+ Stakeholder models

+ Communication strategy

+ Terms of Reference and membership criteria

The session will conclude with a networking opportunity.

Registration for this session is open to those actively interested in the genetic, undiagnosed and rare disease community outcomes. Location advised on registration.

NB: If you are joining us for both parts of the day a light lunch will be provided.

For more information check this page in February where links to full biographies of our facilitators and key note speakers can be found.


For any questions email info@gsnv.org.au


Skip to content