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Last month we successfully held our Rare Disease Day Event virtually over Zoom to the community. With over 90 people officially registered on the day, our video live - streamed via Facebook and has received over 250 views since Feb 26th 2021.

If you were unable to take part on the day or wish to revisit the amazing content from our CEO Monica Ferrie, guest speakers Megan Donnell - CEO of Childhood Dementia Initiative, Sean Murray - CEO of the Mito Foundation and the witty Too Peas in a Podcast, you can access a recording on the GSNV YouTube channel- @GSNV Info or simply click the link below

https://www.youtube.com/channel/UC7TwaPxgrVLeow0-UdyH-oA

Themed "Who's on your team?" the day presented a series of conversations lead by Monica Ferrie and focused on strengthening the capacity of individuals within the Genetic, Undiagnosed and Rare Disease communities to establish their ‘team’ for support, advocacy and awareness locally, nationally and globally.


RARE DISEASE DAY 2021:
SUPPORT GROUP WORKSHOP EVENT


As a result of the ever changing Covid-19 restrictions we were required to postpone our face to face event seeking to bring together our support group leaders in a facilitated workshop-
A NEW DATE HAS NOW BEEN ANNOUNCED

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.

We encourage all support groups regardless of your size or stage of lifecycle, to take part in this FREE workshop. This is a unique opportunity to draw upon the experience of other community leaders to build your own team of supporters that will contribute to the advocacy and awareness of your condition in the future.

By using a virtual platform we will be able to facilitate an unlimited amount of support groups attending this hands on workshop with access to our community mentors. Breakout rooms will be conducted to ensure you finish the workshop with the outcome of identifying your key local and international community changemakers to invite to join your 'team".

Facilitators will be approached from our community to support this event, but if you would like to volunteer for this role on April 27th please get in touch by email no later than April 5th 2021.

 

The GSNV theme : WHO'S ON YOUR TEAM Support Group Workshop was postponed from its original date of March 1st 2021
Register Here NOW !
#mygenesandme
 
#mygenesandme​  is a social media initiative that was launched by the GSNV on Rare Disease Day 2021. It will be used to create a conversation about genetics and genetic diversity in the Australian community and build some inclusiveness momentum.
Our goal is to:
- To build health literacy
- To promote inclusiveness and community
- To build public familiarity with genetics and the power of genetic data for good
- To involve the genetic, undiagnosed and rare disease communities in positive engagement with the broader community

The project seeks to being a conversation and create momentum in social media raising awareness of My Genes and Me.
We are encouraging you as our community to make 10- 20 second videos on your phone answering – What my genes mean to me.
These will be entered onto a social media platform, moderated and put up for viewing by the community.
We will use and promote the hashtag #Mygenesandme

Please share this initiative through your own social media platforms
Disclaimer Link for #mygenesandme
The Genetic Link has Relaunched !
GENETIC LINK UPDATE
The GSNV has relaunched the Genetic Link website
 
Welcome to our new relaunched Genetic Link website- home of a collection of resources specifically for our Genetic, Undiagnosed and Rare Disease community. This website has resources for Individuals and Families without needing a log in, plus Support Groups and Health Professionals where a log in is required and is linked to your GSNV membership.

SUPPORT GROUPS:
Head to the SUPPORT GROUP MENU 

To log in you will need your support groups unique login and password as a GSNV member. If you have forgotten these details or haven't registered to be a member with us yet, please contact us to set this up.  

Once logged into the support group area you will now find 3 distinct areas of resources :
1. General Not-for-profit Resources - useful links covering all topics that inform a support group organisation
2. Share for Rare Resources- allows you to Book an Expert
3. Support Group Lifecycle Stages - resources and documents to support the growth of support groups through the 3 stages of its lifecycle. 

HEALTH PROFESSIONALS:
Head to  HEALTH PROFESSIONALS MENU 

Once logged into the Health Professionals area you will now find 2 distinct areas of resources :
1. Genetic Health Professionals
2. Non Genetic Health Professionals
 
We will be continually adding to the resources in the Genetic Link and welcome your feedback and input.

There is an area dedicated to RESOURCES CREATED BY SUPPORT GROUPS FOR THEIR COMMUNITIES
and we encourage you to share with us documents you have created along your journey that have enhanced the organisational nature of your support group and community.
Currently we have placed other resources here until we receive those from you.

If you are happy to share resources to be accessed through this portal by other support groups to save them time and expense, please contact us at 
info@gnsv.org.au
email heading: GENETIC LINK RESOURCES  
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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