Genetic Support Network of Victoria (GSNV)

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

25/03/2026

EXPRESSION OF INTEREST

The Genetic Support Network of Victoria, in partnership with The Australian Multicultural Health Collaborative, is working to ensure that multicultural communities can access culturally safe, accessible and responsive genetic and rare disease services.

We invite Filipino and Vietnamese community members, carers, and people with lived experience to join our Community Advisory Group and guide the Mapping the Multicultural Experience – The Genetic and Rare Disease Health Navigation Project.

we're embedding diverse perspectives into the co-design of:
• tools that are culturally meaningful
• clearer pathways through complex systems
• resources that reflect real experiences

Why get involved?
✔ A genuine opportunity to shape services for future generations
✔ Paid participation
✔ Flexible online sessions


🔗 Learn more and apply by 24 April 2026:
https://redcap.mcri.edu.au/surveys/?s=X4TDPDACAP4HDKD7


The Australian Multicultural Health Collaborative
Federation of Ethnic Communities' Councils of Australia - FECCA

23/03/2026

RareNET is an online space to collaborate on rare disease advocacy in Australia.

In March we introduce the 3 advocacy organisations that lead this community initiative known as the GUARD Collaborative:

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

Together, the GUARD Collaborative provides patient and support group leaders a monthly forum to discuss and explore
🔹 the rare disease community priorities
🔹 sector updates and,
🔹 to hear from industry and leading experts

On Thurs 26 March, meet the three Leaders of the organisations that form the GUARD Collaborative:
Monica Ferrie, Alison McIvor GAICD and Emma Bonser

🗓️ Join our FREE lunchtime series
Thurs 26 March
12pm- 1pm (online via Teams)

REGISTER your attendance:
https://events.humanitix.com/rarenet-march-2026-forum

27/02/2026

Today is - an important day to celebrate the individuals that make up our rare disease community.

We acknowledge the many ways families, carers and friends contribute to the quality of life of those living with rare. Big or small, your support makes us feel seen and valued.

Here's to a future that empowers the community to connect, control and choose how we live our best lives!


www.rarediseaseday.org.au