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Over the last year, people in the Genetic Undiagnosed and Rare Disease community across Australia have been sending in journals each month to record their day to day lives. Some of the journal submissions have centred on the impact of COVID-19 but many others have explored coping strategies that will influence their lives way beyond this pandemic. ⁠

This initial project has helped us to understand the lives of people with a Genetic, Undiagnosed and Rare Disease, and their carers. We now have an opportunity to take the next step and identify practical interventions that make could make a tangible difference to their quality of life and for their families.⁠

This study plans to take a positive approach to gathering community priorities for action. Data gathered through this study will help to ensure that future advocacy work undertaken for this population is centred on their experiences and priorities.⁠

We are now seeking members of the community, including family members, healthcare workers and carers to participate in focus groups being held virtually next week and the following week. This is our final call for participants. Please register your interest by scanning the QR code or use the registration button below

Register here for focus groups
THE GSNV Genomics In Schools Project has LAUNCHED.
Our Genomics in Schools resource has been designed for VCE biology teachers, science and humanities teachers.

The project has been created in collaboration with an expert steering committee made up of teachers, members of GTAC (Gene Technology Access Centre), chIPS (Royal Childrens' Hospital Melb) and Melbourne Genomics.

This program is designed to complement interdisciplinary studies, including study design from science, biology and humanities.

The feedback so far is amazing- For more information on the Genomics In Schools project and to register for access to the resources or share with teachers in your network, scan the QR Code in the graphics or head to
The GSNV is updating our database of Australian support groups for rare and undiagnosed genetic diseases.
This will allow finding and connecting with a support group that is relevant to them a simple process.

We need your help to make sure we capture the relevant information in the database. Please help us by completing this short survey  

As a healthcare provider we value your input into how you would use this resource or recommend it to patients.

Please help us by completing this short survey  
Take the survey support groups
Take the survey healthcare providers

 Each month we have a team at the GSNV who are working through all the available small and large grant and funding opportunities applicable to those in our sector.

Each month in our Bits 'N Pieces e-newletter we publish a summary and links so you can apply to the latest grant and funding opportunities. We recognise that applying for funding can be a daunting process, but we are here to support your organisation so you can continue the essential work in your rare disease community.
If you are not on our mailing list to receive the monthly e-newsletter , drop us a note to add you.

Join our mailing list
Asking R U OK? has never been more important. We have really missed connecting in person but loved keeping in touch through our e-news, socials and zoom meetings .
We would like to chat over a cup of coffee and see if you are OK. We will be on a Zoom all morning (at this zoom link, so feel free to come in and out at anytime and meet with other genetic support groups.
We also have some resources on our website:
Date: Thursday 9 September
Time: 9:30 am to 10:30 am
For more information

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. 

What's on at the Genetic Support Network of Victoria

Please email 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
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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! 
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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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