Rare Disease Day 2021

Rare Disease Day– 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 on Friday Feb 26th 2021.

Rare Disease Day is an annual event for the Victorian Support Sector and will be held from 9:30am – 1.30pm on Friday 26th February as a live streamed online event. To support our supporters we will be holding a second event on Monday March 1st for any members of  the GSNV and communities that identify themselves as a support group for people living with genetic, undiagnosed and rare conditions.

Our event will focus on ‘Who’s on your Team ’ for support groups and those interested in the awareness and advocacy of the rare disease sector .  

This continues to be a critical time for the support sector and we look forward to continuing our work to allow all Victorians to flourish and achieve their possibilities.


Friday February 26th 2021: A live streamed online event open to everyone

The 2021 theme  “Who is on your team?”  presents a series of conversations lead by the Genetic Support Network of Victoria’s CEO Monica Ferrie and focusing on strengthening the capacity of the rare, genetic and undiagnosed condition communities to establish their ‘team’ for support, advocacy and awareness.

Join the GSNV as they share the knowledge and journeys of Megan Donnell, Childhood Dementia Initiative, Australia and the interconnecting role of Sean Murray CEO and Founder of the Mito Foundation, Australia . 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.

The day concludes with Mandy and Kate from Too Peas In a Podcast while they chat to each other and us (truthfully) about the strength in advocating as a parent- from their perspective as parents of children with additional needs.

The Genetic Support Network of Victoria (GSNV) 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 them for this important event as they discuss how they are building their Team to support you to build yours.

Register here : https://gsnv-rdd2021.eventbrite.com.au


Monday  March 1st  2021- a facilitated workshop for those who identify themselves as a support group for people living with genetic, undiagnosed and rare conditions.

It is preferable for participants to be a GSNV member. You can become a member now. Click here 

This year we understand how much we have missed face to face collaboration, so as part of our Rare Disease Day events we are holding a workshop to bring genetic support groups together.

The theme of the workshop is “Who’s on your team ?” bringing you a morning of mentoring – each attending support group will be led through a process to identify the key players and individuals that will give you the greatest impact in your advocacy and awareness. The outcome of the day will be to strengthen the capacity of individuals as leaders of their GUaRD (Genetic, Undiagnosed and Rare Disease) community to establish their ‘team’, with knowledge about who needs to be on it, how to build it and how to get it working for you.

With Covid-19 Safe restrictions still driving how we can gather, there will be a limited number of face to face places available for the day with all others taking part within their own community locations via ZOOM. This will allow you to pull together your own working group from your community with the benefit of facilitation from the GSNV.

Everyone is welcome to attend and we encourage you to take part in this event which could shape the future of your organisation.

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