Genetic Support Network of Victoria (GSNV)

24/08/2026

🗣️ How Should Genetic Information Be Used and Shared?

This conversation includes everyone. The LINEAGE-GUARD Community Advisory Group invites people aged 18 years and over living in Australia to participate in a short survey. No genetics knowledge is needed. We are interested in people’s perspectives, experiences, and values, whether they know a lot, a little, or nothing about genetics.

📌 Follow the link (https://lnkd.in/gVftfjYg) to learn more and take part.

Genetic Support Network of Victoria (GSNV) Genetic Alliance Australia Syndromes Without A Name - SWAN Australia

13/07/2026

🟦Australia is home to world-leading genomics research, but one of our greatest challenges now is ensuring those discoveries translate into routine clinical care and make a meaningful difference in the lives of patients and families.

This July, RareNET invites Rare Disease Support Group Leaders to speak directly with Industry leader, Dr Erin Evans CEO of InGeNA Limited on what matters most in the future of genomics and precision medicine in Australia.

Support group leaders have a unique opportunity to explore how genomics and precision medicine can move beyond the research setting and become more accessible, equitable, and impactful for the rare disease community.

This is an opportunity for support group leaders to contribute their insights, raise community priorities, and be part of the conversations that will influence the future of rare disease care.

Your voice, and the voices of the communities you represent, are essential to building a more responsive, equitable, and effective health system for all.

📆 Thursday 16 July 12pm- 1pm (online)

Register via Humanitix
https://lnkd.in/gPxkfYWz

19/05/2026

🟨 National Volunteer Week | 18–24 May
This week, we proudly celebrate the volunteers who are the heart of the genetic and rare disease community.

At GSNV, we are deeply grateful to work alongside individuals who generously share their time, skills and lived experience to ensure our community is supported, connected and heard.

We extend our sincere thanks to the many volunteers across Australia including those leading and contributing to diverse rare disease support groups. Your advocacy, compassion and commitment drive meaningful change for individuals and families navigating complex journeys.

Your work strengthens our collective voice and advances equity for our community.

We also acknowledge our dedicated student volunteers, who engage with curiosity and care to better understand the lived experience of rare disease. Your willingness to listen and learn helps embed patient advocacy into the future of genetic healthcare.

So much of what we achieve is made possible through the generosity of volunteers. Thank you for the impact you make every day.

Your contributions truly enable our community to thrive.

17/05/2026

🟦 What's On This Week:
RareNET welcomes PreGEN: centering the family and parent experience of prenatal genetic testing

Rare disease families deserve conversations grounded in understanding, empathy and evidence.

This week we explore the work of PreGen and the published psychosocial research that highlights the real experiences of parents navigating prenatal testing.

Join us as we welcome Dr. Sarah Long, Genetic Counsellor and Prof. Tony Roscioli from PreGen to:

🟦 Learn more about PreGen
🟦 Hear and reflect on the parent experience
🟦 Build stronger community knowledge and advocacy capacity
🟦 Connect with trusted resources and ongoing support pathways

This forum invites support group leaders, advocates, and people living with rare disease to build knowledge and confidence to engage and support conversations within their own networks about prenatal genomic testing.

This is a FREE lunchtime online forum
📆 Thursday 21st May
12pm – 1pm (Online)

👉 REGISTER NOW: https://events.humanitix.com/rarenet-may-2026-forum

Note: this session will not be recorded.

RareNET May community forum welcomes PreGen to discuss prenatal genomic testing and supporting families and individuals across the diagnostic journey.

12/05/2026

💙 International Nurses Day
Our Nurses. Our Future. Empowered Nurses Save Lives

Nurses are often the first listeners and the trusted advocates for individuals and families navigating complex, lifelong conditions. In genetics and rare disease care, nurses play a critical role in helping people understand their diagnosis and coordinate care across systems.

The GSNV recognises that investing in and empowering nurses is an investment in equitable, person- and family-centred care and in better futures for people living with genetic and rare conditions.

Today we honour and thank the nurses who stand at the heart of the genetic, undiagnosed and rare disease community.

11/05/2026

🟦RareNET May Forum 21st May: PreGen - supporting families through prenatal genomic care

During pregnancy, when an ultrasound identifies changes in the baby, prenatal genomic testing can offer families answers previously unavailable. Yet, the family and parent perspective; the emotional burden of waiting for results and how to make sense of complex findings is rarely heard.

Our May RareNET Forum welcomes PreGen, a national, MRFF-funded research program that provides funded prenatal genomic sequencing through three accredited diagnostic laboratories (NSW Health Pathology Randwick, VCGS, SA Pathology).

In this session, we centre the family and parent experience, highlighting Dr.Sarah Long’s interviews with families undergoing whole exome sequencing and the gaps many families experience once they move beyond specialist services and return to their local care and community supports.

Join us to find out about PreGen's clinical advancements and how we ensure sustained, equitable access to prenatal genomic testing in Australia.

This FREE lunchtime forum invites support group leaders, advocates, and people living with rare disease to build knowledge and confidence to engage and support conversations within their own networks about prenatal genomic testing.

📆 Thursday 21st May
12pm - 1pm (online)

👉 Register via Humanitix:
https://events.humanitix.com/rarenet-may-2026-forum

22/04/2026

Future Medicine: Can Stem Cells Save Sight?

📅 Thursday 21 May 2026
🕖 7:00pm AEST
💻 Online Webinar

Hosted by the National Stem Cell Foundation of Australia, this live webinar will bring together three of Australia’s leading stem cell researchers and eye clinicians to discuss how stem cell science is helping researchers better understand and potentially treat blindness and low vision.

Topics will include:
🔹 Gene therapy clinical trials for inherited retinal diseases such as retinitis pigmentosa
🔹 Research into repairing or replacing damaged retinal cells in Usher syndrome and Stargardt disease
🔹 Stem cell treatments for corneal damage and other causes of blindness

This is a fantastic opportunity for families wanting to better understand the future of vision research, hear directly from experts, and ask questions during the live Q&A.

Register for free here:
https://events.humanitix.com/future-medicine-can-stem-cells-save-sight


UsherKids Australia Syndromes Without A Name - SWAN Australia Genetic Alliance Australia Rare Voices Australia The Royal Children's Hospital, Melbourne Murdoch Children's Research Institute - MCRI

EVENT: Stem cells & eye sight webinar Thurs 21 May 7:00pm AEST. Hear from experts working on corneal damage, inherited eye diseases & other causes of blindness.

20/04/2026

🟧Final Reminder – EOIs Closing Soon!

We’re in the last days of accepting Expressions of Interest to join our Community Advisory Group for the Mapping the Multicultural Experience project.

This project is built with , and your lived experience is what makes it meaningful.

Join us to ‑design culturally safe tools that make navigating and services inclusive for families.

You’ll get:
✅ Paid involvement
✅ Online, accessible meetings
✅ Your voice shaping real change in the genetic and rare disease sector

If you’ve been thinking about applying, now is the perfect time.

EOIs close 24 April 2026.
🔗 Apply here: https://redcap.link/EOI-CommunityAdvisoryGroup

16/04/2026

🟦 RareNET Forum 23 April

A/Prof Alison Archibald, certified Genetic Counsellor and co‑founder of GenoCare, joins us for a timely and compassionate discussion about what truly holistic care can look like for people undergoing .

In conversation with GSNV CEO, Monica Ferrie we explore GenoCare’s integrated model embedding mental health support designed around the real experiences of individuals and families navigating uncertainty, diagnosis, and life beyond it.

This April RareNET Forum is an opportunity to understand the range of service models available, how referrals work in practice, and why supporting mental wellbeing alongside genomic care matters so deeply.

We invite patients, families, carers, advocates, and clinicians to join us as we ask:

🔵 How can integrated models of care better meet the diverse needs of the rare disease community?

🔵 How do we ensure genomic advances translate into meaningful, compassionate care for individuals and families?

Come be part of this important conversation.

📆 Thurs 23 April
12-1pm| online

Register via Humanitix:
https://events.humanitix.com/rarenet-april-2026-forum

08/04/2026

🟩Does genetic testing have an environmental impact?

Researchers from Kings College London (UK) in collaboration with LINEAGE Study are seeking participants for an interview on the environmental impacts of genetic testing.

Your insights can help researchers better understand the views, beliefs and experiences of those who've had DNA collected or undergone genetic testing

See more information and to take part in the flyer below