Rare Disease Day takes place on the last day of February each year. This year the Genetic Support Network of Victoria 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.
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.
Our team is charged with building and supporting a strong sector and support network for all conditions, people living with genetic, undiagnosed and rare disease and those who support them. Join us for this important event as we discuss how we are building our Team to support you to build yours.
The Day's Agenda :
9:30am-9:35am: Welcome
9:35am-9:45am: Minister Introduction
9:45am-10:30am: Monica Ferrie -The GSNV Team
10:30am-10:40am: Break + #Mygenesandme segment
10:40am-11:10am: A support group case study Megan Donnell - CDI
11:10am-11:40am: Health Professional Sean Murray - Mito Foundation
11:40pm-12:00pm: Live Q & A Open Panel with Megan & Sean
12:00pm-12:10pm: Break + #Mygenesandme segment
12:10pm-12:40pm: Too Peas in a Podcast Mandy Hose & Kate Jones
12:40pm- 1:00 pm : Live Q & A with Too Peas
1:00pm -1:15 pm : Closing address with Monica Ferrie
5 сен 2024
