Genetic Support Network of Victoria (GSNV)

12/11/2025

🌡RARE DISEASE COMMUNITY FORUM Each month RareNET brings leaders across the rare disease community together to engage with health, scientific and community speakers to promote advocacy initiatives and gain sector updates.

This month we’re excited to welcome Julia Mansour, CEO of the Human Genetics Society of Australasia as our guest speaker.

Julia brings over 30 years of expertise across genetics, health policy and leadership. She’s a registered and certified clinical genetic counsellor and combined with her legal expertise offers an insightful and invaluable lens to advocacy and patient care.

Support Group Leaders are invited to attend this lunchtime forum and gain exclusive access to:

✅ engage with a genetics leader to shape the rare disease diagnostic and clinical experience
✅ discover policy updates and networks that strengthen rare disease advocacy
✅ build connections with HGSA for collaboration and patient-centred priorities

📅 Thursday 20 Nov 12pm - 1pm | ONLINE

👉 Register NOW: https://events.humanitix.com/rarenet-november-forum

Let’s work together to ensure an informed, empowered rare disease community.


Genetic Alliance Australia Syndromes Without A Name - SWAN Australia

Facilitated by our special guest, Julia Mansour – CEO, Human Genetics Society of Australasia (HGSA)

10/11/2025

A great opportunity for teachers to participate in this 1-day workshop and understand practical classroom strategies for students living with neuromuscular disability

Register below 👇

When you have a student with a neuromuscular disability in your classroom, you want to get it right. You want them to feel included, supported, and able to learn alongside their peers. 💙

Join us for a one-day workshop where you'll learn from experts AND hear directly from students, parents, and experienced teachers about what actually works in real classrooms.

Plus, every ticket purchased goes into the running to win a The School of Play .Co prize pack!

📅 28 November 2025 ⏰ 9am - 5pm📍 Parkville

Teachers will walk away with:
✅ Clear understanding of neuromuscular disabilities
✅ Practical classroom strategies
✅ Mental health support techniques
✅ Assistive technology know-how
✅ Action plan ready to implement
✅ Ongoing support from MDA

This isn't just another PD day, it's practical, expert-led learning that will change how you support your students.

Limited spaces available. Register now 👉 https://inclusive-classrooms-understanding-and-supporting-students.raiselysite.com/

Know a teacher who'd benefit? Let them know!

06/11/2025

Following the success of the 2025 Human Genetics Society of Australasia annual scientific conference, we invite Support Group Leaders to engage with HGSA CEO, Julia Mansour and discuss the unique clinical experience of our community.

Together with our partners, Genetic Alliance Australia and Syndromes Without A Name - SWAN Australia join us as we explore the community and scientific perspectives to ensure a model of care that delivers the best clinical experience for people living with rare disease.

Don't miss our last RareNET Forum for 2025!
📍 Thurs 20 Nov 12pm-1pm

⏰ Register now for this free ONLINE event:
https://events.humanitix.com/rarenet-november-forum

Facilitated by our special guest, Julia Mansour – CEO, Human Genetics Society of Australasia (HGSA)

14/10/2025

Some days, it feels like my phone never stops buzzing.
A late-night message from a parent seeking advice.
A new member joining after a recent diagnosis.
A heartfelt post about loss, hope, or resilience.
As a moderator of an online rare disease community, I’m proud to hold space for others to listen, to connect, to make sure every voice is heard. But being always on comes with its own quiet weight..
- Anon Support Group Leader

This is the blurred lines between advocacy and self-care.

The exhaustion that comes not from lack of passion but from caring deeply, every single day.

Moderating a space built on empathy is a privilege, but it can also be isolating. We hold so many stories that never leave the screen.

💬 How do you look after your own mental health while supporting others online?
💬 How do you switch off without feeling like you’re letting your community down?

If this resonates, join us for the GSNV IMPACT Series 2:
Caring for the Carers: Mental Health for Support Group Leaders

For an hour, we come together for an open, compassionate conversation about sustaining wellbeing while leading and caring for others.

📌 Wednesday, 15 October, 12 p.m. – 1 p.m.
📌 Register to attend this online forum:
https://events.humanitix.com/caring-for-the-carers-mental-health-for-support-group-leaders-or-gsnv-s-impact-series

A free online workshop on protecting your mental health while leading and supporting others.

14/10/2025

Some days, it feels like my phone never stops buzzing.
A late-night message from a parent seeking advice.
A new member joining after a recent diagnosis.
A heartfelt post about loss, hope, or resilience.
As a moderator of an online rare disease community, I’m proud to hold space for others to listen, to connect, to make sure every voice is heard. But being always on comes with its own quiet weight..
- Anon Support Group Leader

This is the blurred lines between advocacy and self-care.

The exhaustion that comes not from lack of passion but from caring deeply, every single day.

Moderating a space built on empathy is a privilege, but it can also be isolating. We hold so many stories that never leave the screen.

💬 How do you look after your own mental health while supporting others online?
💬 How do you switch off without feeling like you’re letting your community down?

If this resonates, join us for the GSNV IMPACT Series 2:
Caring for the Carers: Mental Health for Support Group Leaders

For an hour, we come together for an open, compassionate conversation about sustaining wellbeing while leading and caring for others.

📌 Wednesday, 15 October, 12 p.m. – 1 p.m.
📌 Register to attend this online forum:

This link will take you to a page that’s not on LinkedIn

06/10/2025

Kicking off October Wellness Month 2025!

We are proud to announce an exciting two weeks! Don't miss out on the upcoming events this month:

RareNET Special Spotlight: A conversation with Matilda Haas, Genomics Australia
📌 Thursday, 09 October, 12 p.m. to 1 p.m.
📌 Register to attend this Online forum: https://events.humanitix.com/rarenet-october-forum

GSNV's IMPACT Series 2: Caring for the Carers: Mental Health for Support Group Leaders
📌 Wednesday, 15 October, 12 p.m. to 1 p.m.
📌 Register to attend this Online forum: https://events.humanitix.com/caring-for-the-carers-mental-health-for-support-group-leaders-or-gsnv-s-impact-series

RareNET October Wellness: Understanding the EURODIS Mental Health Toolkit - Best Practice and Design
📌 Thursday, 16 October, 12 p.m. to 1 p.m.
📌 Register to attend this Online forum: https://events.humanitix.com/mental-health-toolkit



Monica Ferrie, Tiffany Boughtwood, Matilda Haas, Syndromes Without A Name (SWAN) Australia, Genetic Alliance Australia, Emma Bonser, Alison McIvor GAICD, Rare Voices Australia

12/09/2025

🌟 Speaker Reveal! 🌟

We’re thrilled to welcome Dr Jennifer Beckett as the guest speaker for our first GSNV IMPACT Series workshop:

Start with the Heart: Creating and Growing Your Online Support Group
📅 Wednesday 17 September | 🕛 12–1 pm (AEST) | 💻 Online

Dr Beckett is a senior lecturer in Media and Communications at the University of Melbourne, with research exploring online communities, digital governance, and the mental health of digital workers. She’s also a founding member of Australian Community Managers, where she’s contributed to training on moderation, defamation law, and managing mis/disinformation.

With her wealth of expertise, Dr Beckett will guide us in exploring how to create, grow, and sustain vibrant online support groups. 💡

👉 Don’t miss this inspiring session! Register now through Humanitix – link in bio.

12/09/2025

✨ We’re kicking off the GSNV IMPACT Series with our very first workshop! ✨
Start with the Heart: Creating and Growing Your Online Support Group
📅 Wednesday 17 September
🕛 12:00–1:00 pm (AEST)
💻 Online | Free to attend
In this hands-on workshop, you’ll learn how to:
💡 Decide if an online group is right for your community
💡 Build and sustain active, supportive online spaces
💡 Use step-by-step guides, templates, and practical tools with confidence
This session will also launch the plain language version of the Benchmarking Communities of Support project, giving you access to templates and resources you can use straight away.
🌟 Don’t miss this chance to connect, learn, and grow your community with heart.
👉 Register now through Humanitix – link in bio!

04/09/2025

🌟 Introducing the GSNV IMPACT Series! 🌟

The GSNV is excited to bring you our new monthly program of free online workshops designed especially for support group leaders. Each session is led by expert guest speakers and packed with practical strategies, tools, and resources to help strengthen your group and community

✨ Topics include mental health support, creating inclusive materials, building online communities, research involvement, grant writing, and more.
💻 Interactive, practical, and accessible from anywhere!
📅 Join us each month to learn, connect, and grow together.

01/09/2025

Launching in September the GSNV's IMPACT Series — monthly webinars created to strengthen Rare Disease Support Groups with practical, research-driven insights.

This September, we invite Support Group leaders to our free 1-hour online workshop:

Start with the Heart: Creating and Growing Your Online Support Group

Led by Dr Jennifer Beckett (University of Melbourne, School of Culture and Communications) this session will explore how to design, grow and sustain an online community that truly supports people living with rare, genetic and undiagnosed conditions.

What you’ll take away:

- Clarity on whether an online group is right for your community

- Best practice strategies for building trust and engagement

- A practical framework to set up and grow your online presence

- Access to tools, templates and GSNV’s new plain-language Benchmarking Communities of Support guide

🗓 Wednesday, 17 September | 12:00 – 1:00pm (AEST)

📍 Online via Microsoft Teams

💰 Register via Humanitix: https://rb.gy/i3tgn7

A free online workshop with Dr Jennifer Beckett on building and sustaining active, supportive online communities.

19/08/2025

It was a privilege to see the Genetic Support Network of Victoria (GSNV) CEO Monica Ferrie contribute as a panellist at the recent Conference ensuring the community voice was strongly represented across critical conversations on:

- Artificial Intelligence in genomics

- Governance frameworks

- Data consent and privacy

- The evolving genomics ecosystem

The inclusion of community perspectives alongside clinicians, researchers, and policymakers highlights the importance of partnerships where transparency, equity, and consent are not just aspirations, but guiding principles.

We are proud that the GSNV continues to champion these values, ensuring that people living with genetic and rare conditions have their voices heard at the highest levels of decision-making.

Syndromes Without A Name - SWAN Australia Genetic Alliance Australia

30/07/2025

STUDY PARTICIPANTS WANTED: Understanding the Role and Engagement of People with Disabilities in Genomics Research

The purpose of this study is to understand how people with disabilities and their families perceive their role and meaningful engagement in genomics research, and what are the barriers and facilitators to such engagement.

What does it involve?
This study involves semi-structured individual interviews with people with disabilities and their family members conducted over Zoom for approximately 60 minutes.

Who are we asking?
We are looking for Individuals who identify as having a disability associated with a genetic condition as well as family members with a role in the care and support of such individuals. Participants must be 18 or older, have the capacity to provide informed consent and be able to communicate in English, either directly or through a support person.

Participant Contribution and Benefits
Each participant in this study will receive a $50 gift voucher. Participants will help to generate knowledge and understanding, which will be used to support genomics researchers to better engage people with disabilities in future research.

Who is conducting the study?
The study is conducted by Radostina Breedt – PhD candidate at The University of Queensland, under the supervision of Professor Karen Nankervis, Professor Rhonda Faragher, and Dr Maria Vassos. This study adheres to the Guidelines of the ethical review process of The University of Queensland and the National Statement on Ethical Conduct in Human Research [Ethics ID number: 2025/HE000717].

For questions related to this study, please contact Radostina Breedt on r.breedt@student.uq.edu.au