What's on at the GSNV? May 2021

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GSNV WORKSHOP EVENT APRIL 27th SUMMARY

We are so thrilled that our first attempt at holding a 'hybrid event' - face to face facilitators mentoring virtual attendees- was a huge success.

The day commenced with an introduction from Tim Wilson MP, Federal Member for Goldstein

We then rotated our attendees through the 7 facilitators who sat with us at MCRI for the morning. I wish I had taken a photo of them on their isolated tables with headphones on, much like a call centre ! The post Covid-19 reality but at least we were mask free! For the next two hours our participants chatted through the topic areas to build a list of who they should have on their own team to build strength in advocacy and awareness for their individual conditions.

We will be collating feedback from everyone who attended so we can have a good understanding of how we can improve our events in this format.
If you were unable to attend but have some feedback for us on the timing, topic covered or how it was run please take this short survey to allow us to improve our services to the community .

Take the event feedback survey

NATIONAL STRATEGIC ACTION PLAN FOR RARE DISEASE
FUNDING FOR IMPLEMENTATI0N

Rare Disease - Support, Education and Training
Close Date and Time: 12- May-2021 2:00 pm (ACT Local Time)
https://www.grants.gov.au/Go/Show?GoUuid=56259385-afd9-2ef6-1add-8ddadfa955a4

The Department of Health has opened the ‘Rare Disease – Support, Education and Training’ competitive grant to assist with the implementation of the National Strategic Action Plan for Rare Diseases.
The purpose of the grant is to facilitate the development and delivery of awareness and education resources, and care and support services, for people living with a rare disease, their families and carers, health professionals and the wider population.

The grant will close on 12 May 2021 at 2pm (AEST). Click through for full details: https://bit.ly/2QEjQoy

The GSNV would like to invite any of our Members to access this grant through a collaborative submission. If you have any ideas that you would like to bring to life through accessing this grant, and that we can invite other support groups to be part of , please contact Monica Ferrie ASAP

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 PATHWAYS 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

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Genetic Support Network of Victoria · Royal Children's Hospital · Murdoch Childrens Research Institute 50 Flemington Road · Parkville, VIC 3052 · Australia