The Genetic Support Network of Victoria Rare Disease Day 2021
26 February 2021
Hosted by Genetic Support Network of Victoria
Join the GSNV in celebration of Rare Disease Day with a virtual journey showing the power of alliances that build supportive teams. This year GNSV will hold a virtual event to raise awareness amongst the general public and our community of Genetic, Undiagnosed and Rare disease patients, their families , support groups, clinicians and researchers, health professionals and anyone who has an interest in rare diseases.
When: February 26th, 9:30am-1:30pm AEST
Where: Virtual Event on Zoom. Link sent after registration.
Our theme is "Who is on your team?", presenting a series of conversations lead by our CEO Monica Ferrie and focusing on strengthening the capacity of individuals within the Genetic, Undiagnosed and Rare Disease communities to establish their ‘team’ for support, advocacy and awareness locally, nationally and globally.
Join us as we share the knowledge and experiences of Megan Donnell of the Sanfilippo Children's Foundation and Childhood Dementia Initiative and interweave the role of Sean Murray CEO and Founder of the Mito Foundation. Sharing a motivation to drive impact in the mito community, both these speakers will draw upon their experiences and the role they played to support the mito community with the ultimate goal to find a cure for these diseases.
To bring laughter and a tear to the mornings event we chat with Mandy and Kate from Too Peas In a Podcast, while they chat to each other and us (truthfully) about about the strength in advocating as a parent from their perspective as parents of children with additional needs.