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

SAVE THE DATE for our Rare Disease Day Event 
We are planning a hybrid event with a virtual component  streaming live speakers via various media channels on FRIDAY 26TH FEB 2021
Followed by a face to face facilitated workshop for support groups on MONDAY 1st MARCH 2021 .
More details to follow in the New Year 
THE GSNV 5 DAYS TO WELLNESS WEEK FEEDBACK:

For the first time we held an event supporting the supporters with our GSNV 5 Days to Wellness Week in November
We are seeking feedback on our Wellness Week Program, whether you were able to attend or not. Please answer each of the questions to help us improve the experience for future participants. Thank you for being part of Genetic Support Network of Victoria and completing this brief survey!

All the resources will be available on the event page of our GSNV website and then be moved to be accessed on the Genetic Link early next year 
You Can Find the Survey Here

 
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 
Come and join us for one of the last two Thursday's left for the GSNV open virtual chat room in 2020

Keep watching our social media to be updated over the summer break for what's in store next year

We would love to hear from you - Let us know if you would like us to keep this going in its current format through 2021
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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