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RARE DISEASE DAY 2021
The GSNV theme : WHO'S ON YOUR TEAM 

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 on Friday Feb 26th 2021.

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 focuses on strengthening the capacity of the genetic, undiagnosed and rare disease communities to establish their ‘team’ for support, advocacy and awareness.

Join the GSNV as they share the knowledge and experiences of Megan Donnell,  Childhood Dementia Initiative and the role of Sean Murray CEO and Founder of the Mito Foundation. Our  guest speakers share a motivation to drive impact in the mito community, drawing 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 GSNV team is charged with building and supporting a strong sector and support network for all people living with genetic, undiagnosed and rare disease and those who support them.

Join us tor this important event as we discuss how we are building our Team to support you to build yours.

 
Register Here
RARE DISEASE DAY 2021- Workshop Event for Support Groups
The GSNV theme : WHO'S ON YOUR TEAM 
 

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 ?" offering 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.

Registration is open to all support groups who have an organisational office in Victoria.
Register Here
UPDATED GSNV WEBSITE ANNOUNCEMENT!

Have you visited the GSNV website recently ?

We have updated our GSNV website and we know you will all love the changes!
You can now access information for INDIVIDUALS, SUPPORT GROUPS or HEALTH PROFESSIONALS  quickly via the home page.

Also on the home page you will find our NEW QUICK LINKS 

Directory of Genetic and Rare Disease Support Groups 
Directory of Community Services 
Directory of Genetic Conditions
Find a Genetics Clinic
We have collated our lists for support into relevant directories- Here you will find updated GSNV Directories which for the first time will address the multidisciplinary support that exists for rare genetic conditions on a state , national, international, and virtual level. These Directories will allow you to search for support based on a description, gene, category, or alternative name by filling in a few fields and a click of a button, without the hassle of googling support referrals and services online. The database is capturing the most up to date information about genetic support groups, from big incorporations to small online groups with the help of our dedicated and skilled group of GSNV volunteers.

We hope that this will fulfil a need that newly diagnosed individuals and families have to access information immediately when they crucially need it most.

We encourage you all to check them out and send us your feedback. 

Live Facebook Feeds to the GSNV page are now available on the Home Page so you can keep up to date with what is happening across the community quickly.

COMING SOON... We are creating a page for donations to the GSNV. For now we are no longer requiring individuals and organisations to pay a fee to become members of the GSNV but offer the ability for patrons to donate to our organisation to contribute to services such as the Margaret Sahhar Grant.
 
Look out for the Genetic Link Relaunch at our Rare Disease Day Event

 
PATIENT PATHWAYS
PROGRAM AVAILABLE NOW 

People living with a genetic, undiagnosed or rare condition can access the telehealth nurse through the  GSNV website  or the Syndromes Without a Name (SWAN) website and seek an appointment and further case management with a telehealth nurse. Patients and families will also be linked with the appropriate support organisation through this process.
The aim of our Pilot is assist genetic, undiagnosed and rare disease patients and families to access the health system and all that is available to them, including clinical trials. 
 
 
Patient Pathway Contact Form
What's on at the Genetic Support Network of Victoria

Please email info@gsnv.org.au if you have any questions, concerns or queries 
Want to become a member of the GSNV?
Membership allows you to book rooms at RCH and MCRI, access the support group portal on the Genetic Link, access GSNV volunteers, apply for our small grants scheme and more! MEMBERSHIP IS NOW FREE
There are only 
Do you want your organisations events shared in our communications?

Ask us how we can advertise it for you on Instagram through our support group "shout outs" twice a month,Facebook,  Bit's n Pieces e-newsletter, and more! 
@gsnv_info
@genetic.support
gsnvinfo
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Genetic Support Network of Victoria · Royal Children's Hospital · Murdoch Childrens Research Institute 50 Flemington Road · Parkville, VIC 3052 · Australia

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