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February 2022

February is an important month in the rare disease community as we celebrate Rare Disease Day on February 28th every year. This year is no exception as we bring you a world class event  online to mark this day-registrations are now open for all to attend
We share with you updates on our website & our volunteer program applications are now open

The GSNV had a remarkable year in 2021 despite the set backs we all encountered with lockdowns and restrictions imposed by the Covid-19 virus.  Take a moment to explore our achievements for, and with, the community as a whole. 
View 2021 GSNV Year In Review here
Everyone can now access our updated DIRECTORIES OF CLINICAL TRIALS, PATIENT REGISTRIES & RARE DISEASE HEALTH PROFESSIONALS on the home page of the GSNV website 
A self nomination form is available to add your details to keep these databases and directories current.
Please contact us for more information at :
The GSNV Volunteer program is now accepting applications for 2022 intake. 
Volunteers can be students interested in applying for the Masters of Genetic Counselling program (University of Melbourne), or individuals seeking some hands-on experience in the genetics community. The GSNV also seeks to engage volunteers from its broader networks and community so please share with your networks. 

The volunteer program is an opportunity for our support groups to source suitable volunteers to assist them in various tasks and projects.

Applications for the GSNV Volunteer Program will only be accepted between January and April 2022. Places are limited and due to the high volume of applicants, the GSNV advises that not all applicants can be accepted as a formal volunteer.


If you are interested in participating in the Volunteer Program and being matched with a support group, or know someone who would, we would love to hear from you.

You must: 

  • Be at least 18 years of age
  • Enjoy providing a service and working with others in a challenging environment
  • Highly responsible
  • Be committed to the program
  • Have effective written and verbal communication skills
  • Have some knowledge of ethical practice

Please forward your application to: 
and more information can be found on our website.



Join the team at the GSNV, on February 28th, for a two part event to celebrate the lives of those living with genetic, undiagnosed and rare disease. Our morning session runs from 10-11:30am starting with a brief introduction from our CEO Monica Ferrie, followed by a series of presentations by international rare disease experts from Rare Disease International (RDI), Rare Disease Europe (Eurordis), Genetic Alliance America & UK, the Asia Pacific Alliance of Rare Disease Organisations (APARDO) and the Director of the Murdoch Research Institute, Kathryn North.
As experts in rare disease around the globe they will share with us their perspective on the challenges facing the Australian rare disease landscape in 2022 and create the framework for our afternoon workshop session.

From 12:00-1pm we will run online break out groups to dive into discussions on key categories raised by the morning session. Facilitated by local experts in integrated healthcare, education, industry and research, participants will be part of an engaging two-way conversation driving outcomes that can strategically create change for the rare disease community in these areas

Everyone is welcome to join these conversations
Register Now

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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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