The Genetic Support Network of Victoria Rare Disease Day 2023

The Genetic Support Network Victoria (GSNV) is a vibrant and active organisation committed to promoting the interests and well-being of people affected by genetic conditions.  The Network is proud to be associated with a wide range of support groups throughout Victoria and Australia as well as peak professional bodies such as Victorian Clinical Genetics Services.

The Genetic Support Network of Victoria

Join the Genetic Support Network Victoria (GSNV)for two special events to support  Rare Disease Day  on February 28th 2023

South Yarra

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” 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 of all stakeholders 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?Part 1: Hybrid Symposium10:30am-12:00pmLocation: South Yarra, Melbourne ( full details provided on Registration) ONLYKeynote speaker: Richard Vines, Co-Founder and Chief Executive of Rare Cancers Australia Join us in person or online to hear the story of the National Oncology Alliance, which has been successful in significantly elevating the patient voice in the Australian health care system.We will also have the opportunity to hear from other key players in the rare disease space in Australia on ways to build existing relationships to support the elevation of the rare disease patient voice further. Part 2: Workshop1:00pm-2:30pmLocation: South Yarra, Melbourne ( full details provided on Registration) ONLY Join us for a face-to-face, facilitated discussion, as we start the community consultation process for a potential new alliance. 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 criteriaThe session will conclude with a networking opportunity. Registration for this workshop is open to those actively interested in the health outcomes for the genetic, undiagnosed and rare disease community.For more information head to our website www.gsnv.org. For any questions, email Info@gsnv.org.au

The Genetic Support Network of Victoria Rare Disease Day 2023

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The Genetic Support Network of Victoria Rare Disease Day 2023

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