Genetic Support Network of Victoria (GSNV)

The GSNV’s 2024 October Practical Wellness Month is here!

Throughout October, join our series of free online workshops and presentations offering valuable practical tools and support on mental health and wellbeing for the genetic, undiagnosed, and rare disease community.

Our program includes:
• Understanding Vicarious Trauma: The Caregivers Journey
• The Accidental Counsellor Workshop
• Trauma-informed Care in the Diagnostic Environment Panel Event
• October RareNET: Mental Health and Wellbeing Forum
• Building and Managing Effective Online Support Groups.

Support Group Leaders, Health Professionals and People living with rare disease and their carers are all welcome.

REGISTER NOW via the link: https://shorturl.at/vaa0o

RareNET September Forum continues from our previous meeting and discusses the needs of our genetic rare disease and undiagnosed community in preparation for the 2025 Federal Election.

📅 Wednesday 25 Sept

12pm-1pm

Register for the Zoom link here:

https://shorturl.at/yGnhJ



Syndromes Without A Name - SWAN Australia Genetic Alliance Australia

This morning we heard the announcement by the Australian Government that it will legislate to completely ban the use of genetic test results in life insurance underwriting. This is a huge win for all Australians and our genetic undiagnosed and rare disease community.

The announced reforms will prohibit life insurers from asking for or using applicants’ genetic results to discriminate, and bring Australia into line with other countries such as Canada, which introduced a complete legislative ban in 2017.

Thank you to Jane Tiller (PhD) and Paul Lacaze for leading the charge to ensure that consumers have certainty about the protection of their genetic information into the future.

The Genetic Support Network of Victoria further acknowledges the many Australians who contributed to this campaign sharing personal stories and lived experiences to ensure such a positive outcome for all.

https://www.theguardian.com/australia-news/article/2024/sep/10/australia-insurance-company-discrimination-genetic-testing

Australia to ban life insurance companies from discriminating based on genetic testing results Albanese government says people have been reluctant to get life-saving early testing because of the risk of being refused insurance

SAVE THE DATE - THE GSNV'S OCTOBER PRACTICAL WELLNESS MONTH IS ON AGAIN IN 2024

Featuring new workshops led by local and international presenters

Designed to inform and educate the GUaRD Support Group Community to:
- understand vicarious trauma
- build strategies to manage grief and loss
- improve understanding of trauma-informed care delivery
Plus much more

WATCH THIS SPACE: PROGRAM & REGISTRATIONS OUT SOON!!

📢 The next Federal Election must be held before May 2025

Across the GUaRD sector projects and activities bring the excitement of new possibilities across policy, testing, treatments and new care pathways.

But not all of us are involved or at the table.

Is anything really changing?

Is our community living better lives?

Here's your chance to tell government what we want to happen.

GUaRD Support Group Leaders join us for our RareNETForum this Wednesday 4 Sept 12pm-1pm.
Register here for the Zoom link and agenda outline:
https://rb.gy/r4e2zp

This is a virtual forum for all support group community members to discuss, share insights and collaborate on our community's advocacy efforts.

Syndromes Without A Name - SWAN Australia Genetic Alliance Australia

RareNET Forum AUGUST RareNet is a monthly forum for the genetic rare and undiagnosed community to develop and discuss ideas that improve our patient outcomes.

RareNET August Forum - Postponed
Due to unavoidable circumstances our August RareNET Forum has been rescheduled to Wednesday 4 September, 12pm - 1pm.

You can register for this forum here:
https://www.eventbrite.com.au/e/rarenet-forum-august-tickets-979373351057?utm-campaign=social&utm-content=attendeeshare&utm-medium=discovery&utm-term=listing&utm-source=cp&aff=ebdsshcopyurl

If you have already registered, please use the same zoom link for this forum.

We look forward to seeing you then and sincerely thank you for your understanding

Genetic Alliance Australia Syndromes Without A Name - SWAN Australia

August RareNET the GUARD Collaboration's monthly forum for Support Group Leaders is on again

Wednesday 28 August 12pm-1pm
Register and find out more here: https://rb.gy/78nt5o

Our inaugural July meeting was such a positive start and I welcome all to attend this lunchtime online space to discuss and share sector insights and the opportunities that enhance our advocacy and strengthens the capacity of our community

Syndromes Without A Name - SWAN Australia Syndromes Without A Name - SWAN Australia

RareNET Forum AUGUST RareNet is a monthly forum for the genetic rare and undiagnosed community to develop and discuss ideas that improve our patient outcomes.

As the HGSA Conference wraps up for 2024 we take a moment to thank and acknowledge the breadth of information and knowledge gained around the conference theme: “Beyond Next Generation: The future of genomics”

The GSNV team presented 2 of our key projects outlining the current work being done with our partners to invest in genetic literacy in schools and build the future of genetic healthcare with the patient-lived experience.

THE SCIENCE WITHIN US is a primary and secondary school curriculum content for year 5 – year 12 students designed to encourage students and empower teachers to be informed and engaged in learning about genetic diversity and awareness of health variations that exist in the community.

TRANSFORMING LIVES: COLLABORATIVE STRATEGIES FOR POSITIVE IMPACT understands the unique needs and required support for the Australian rare disease community to help healthcare professionals more effectively comprehend the distinct requirements of this vulnerable group.

Thank you to the many conference delegates across industry, research, patient support groups and genetic counselling who shared enthusiasm for our presentations and to see Australian context data on what the current and future needs are for our rare disease community.

Participating reminds us of the inclusive and supportive connections across the genetic and rare disease landscape and brings hope that the next generation of Research and Healthcare leaders will share in collaborative efforts for positive change for our GUaRD community.

Help Murdoch Children's Research Institute - MCRI researchers understand your experience of genetic screening across the Indian community

The survey is available in multiple languages (Hindi, Punjabi and english) and will take approx 20mins to complete

IndianCare Ethnic Communities' Council of Victoria The Royal Children's Hospital, Melbourne

Thank you to the community who attended our first RareNet online forum yesterday and shared valuable insights and perspectives that will enhance our collaboration and delivery of our joint advocacy

RareNet will run monthly for genetic undiagnosed and rare disease patient and support groups as a place to activate ideas and pathways for our common agenda

Watch this space for further information, registrations and agenda for our August forum

Syndromes Without A Name - SWAN Australia Genetic Alliance Australia

🛑 REMINDER RareNet Forum Weds 31st July 12pm - 1pm

Support Group leaders across the Genetic Undiagnosed and Rare Disease community are invited to the inaugural forum hosted by
Syndromes Without A Name - SWAN Australia Genetic Alliance Australia and The GSNV

Join us at RareNet a platform to share and explore ideas and learn about the opportunities for collaborations that strengthen our GUaRD community.

Registrations are still open: https://rb.gy/uj3yg0

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SURVEY OPEN!

Dont forget to complete the GSNV Support Group survey below.

Your voice matters

DON'T MISS THIS OPPORTUNITY - Share your voice!

📢 Take part in our Support Group Engagement Survey to shape the future of the GSNV services and activities.

Survey Link: https://redcap.link/gsnv_support_group_engagement

Survey closes: 31st July 2024



Syndromes Without A Name - SWAN Australia Genetic Alliance Australia

WORLD Fragile X Day 22 July

We share our excitement with Fragile X Association of Australia that today Federation Square The MCG, AAMI Park, and The Bolte Bridge are among the CBD landmarks to light up along with regional council landmarks in Ballarat, Bendigo, Warrnambool, Geelong and Warragul.

Find out more how you can participate at www.fragilex.org.au

Welcome to RareNet a community platform to bring ideas together, explore disease agnostic priorities within a GUARD collaborative setting.

In partnership with Syndromes Without A Name - SWAN Australia and Genetic Alliance Australia our first forum will be held

Wednesday 31 July 20204 12pm- 1pm
Register for this free online event here: https://rb.gy/uj3yg0

DON'T MISS THIS OPPORTUNITY - Share your voice!

📢 Take part in our Support Group Engagement Survey to shape the future of the GSNV services and activities.

Survey Link: https://redcap.link/gsnv_support_group_engagement

Survey closes: 31st July 2024



Syndromes Without A Name - SWAN Australia Genetic Alliance Australia

Calling our Support Group Leaders - Share your voice!

📢 Take part in our Support Group Engagement Survey to shape the future of the GSNV services and activities.

Survey Link: https://redcap.link/gsnv_support_group_engagement

Survey closes: 31st July 2024

DON'T MISS OUT on our free lunchtime Webinar:
Understanding Unconscious Bias
Thursday 18 July 12-12:30pm ONLINE

Places are limited so register at: https://rb.gy/nbssb2

FREE WEBINAR: Understanding Unconscious Bias: Creating a Safe Space for Support
🗓 Thursday 18 July 12- 1230pm

The GSNV is proud to collaborate with the Centre for Culture Ethnicity and Health on this lunchtime webinar to assist Support Groups design inclusive strategies to support diverse communities.

This 30 minute workshop is designed for Support Group workers to:

💡 learn, recognize and mitigate unconscious bias
💡 improve Support Group and community interactions
💡 discuss and embed inclusive strategies into your practice

Register for this free event and find out more about :
https://rb.gy/nbssb2

Syndromes Without A Name - SWAN Australia

Community and Patient Preference Research (CaPPRe) is partnering with RVA and a group of community stakeholders to conduct an online survey with patients and carers in Australia.

Your participation is valuable in exploring the priorities and concerns of people impacted by rare diseases when it comes to genomic testing options. The goal of this research is to provide insights into the values and preferences of the patient community to policy-makers within government who make decisions regarding public funding for genomic testing.

Who can participate?

We are looking for people living with a rare disease in Australia and/or their carers. Participants must be over the age of 18 to answer the survey.

https://survey.confirmit.com.au/wix/1/p187963481611.aspx?source=RVA

Rare Voices Australia
https://www.cappre.com.au/

CaPPRe High impact preference research CaPPRe are experts in understanding what people value through their preferences in all important areas of life. Our work covers well-being, health, environment, arts and culture, transport infrastructure, utilities, and more. Rigour and tailored study design We recogn...

When things don’t go to plan: Patient’s rights

Presented by Slater and Gordon and Australian Patients Association

Date: Wednesday, 5 June 2024

Time: 12:30 PM – 1:30 PM GMT+10

Registration: Register here

About this Webinar
This session will discuss the rights patients have to information and provide explanations when medical treatment they receive does not go to plan.
The right to receive an explanation, hospital documents, medical records and compensation will be examined.

To Register visit: https://slatergordon.zoom.us/webinar/register/WN_z6kmW-aWTZi_vuKdTJfPow #/registration

Fragile X Association of Australia and the Centre for Disability Studies (research affiliate of the University of Sydney) are undertaking the first Australian study to bring focus to the health, support and wellbeing needs of adults with Fragile X syndrome.

We hope that this work will enhance the quality of life for adults with Fragile X syndrome as they age.

The first stage of this work involves two surveys which ask questions about support needs, health & wellbeing, and future planning for adults with Fragile X syndrome:

(1) survey for Families who have an adult family member living with Fragile X syndrome
(2) survey for Support Teams – in disability, aged care or allied health – who have experience supporting an adult with Fragile X syndrome.

To find out more:
https://www.fragilex.org.au/survey-for-families-of-adults-with-fragile-x-syndrome/

https://www.fragilex.org.au/survey-for-service-providers-supporting-adults-with-fragile-x-syndrome/

PODCAST ALERT: Join GSNV CEO Monica Ferrie Michelle de Silva RDNow Manager and Maya Pinn from Syndromes Without A Name - SWAN Australia to discuss research in the Rare Disease space

Listen here:
https://open.spotify.com/episode/1BcHd7DSI1raaroPm96FHf?si=NjYKhMkZTv2RKunwD3PlYA

Murdoch Children's Research Institute - MCRI The Royal Children's Hospital, Melbourne Rare Voices Australia Share4Rare

The Recommendations to Health and Medical Research Funders and Institutes have officially been released. The GSNV thanks Australian Genomics and the Involve Australia Working Group for developing these recommendations and engaging our participation.

To view the recommendations, visit the Australian Genomics website: https://www.australiangenomics.org.au/projects/involve-australia-public-involvement-in-genomic-research/

Involve Australia has released practical recommendations for health and medical research institutes and funders, urging them to play a stronger role in supporting community involvement in research.

We hope to see institutes and funders take these on board to actively support researcher and community partnerships and make health research more inclusive and impactful for all Australians.

👉 View the recommendations here: https://www.australiangenomics.org.au/projects/involve-australia-public-involvement-in-genomic-research/

A special thanks to the Involve Australia Working Group for their contribution to this project. Genetic Support Network of Victoria (GSNV) | Mito Foundation | Science for All

National Volunteer Week (20th – 26th May) is Australia’s largest annual celebration of volunteering. This special event is an opportunity to highlight the important role of volunteers in our community.

The GSNV extends its appreciation and recognition of all volunteers in our GUaRD community. Many Support Groups were established by volunteer contributions of families with lived experience and because of them our community of individuals, carers and families have access diverse support and resources.

Rare Voices Australia are seeking your input to improve their service to people living with rare disease.

To share your thoughts click on the link and complete this 10 minute survey

Invitation to contribute to the collation of rare disease specific activities in Victoria Take this survey powered by surveymonkey.com. Create your own surveys for free.