Genetic Support Network of Victoria (GSNV)

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

21/07/2025

📍 DON'T miss this event

In May the adopted the first-ever Resolution on Rare Disease.

On Thursday 24 July join Rare Disease International Council Member Monica Ferrie and CEO of the Genetic Support Network of Victoria (GSNV) as she presents the key outcomes and impacts of the resolution for our local community.

Sharing insights into this global and historic milestone we gain a deeper understanding of the positive impact the resolution calls for such as:

✅ Equitable access to diagnosis, care, and social inclusion
✅ Integration of rare diseases into Universal Health Coverage
✅ A WHO-led 10-year Global Action Plan for rare conditions

Find out how global actions on rare disease can positively impact your advocacy here in Australia.

REGISTER NOW: https://events.humanitix.com/rarenet-july-forum

Join us to discuss what the recent adoption of at the 78th World Health Assembly means for us, the rare disease community, and its impacts!

09/07/2025

Join us for RareNET July Forum:
- what does it mean, and how does it affect us?

📌 Thursday 24 July 2025
📌 12 pm-1 pm AEST
📌 Via TEAMS
📌 Register: https://lnkd.in/grT9Harc

The United Nations General Assembly Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families” (Resolution on PLWRD) was first presented in 2021. This first Resolution on represented a major shift in the global policy landscape, promising greater integration of rare diseases in the agenda and priorities of the UN system.

Since then, with the tireless work of our community representatives such as Rare Disease International (RDI), the has been adopted at the 78th World Health Assembly in May 2025!

The adoption of this Resolution by WHO Member States marks a powerful step forward in ensuring equity, visibility, and inclusion for the 300 million people living with a rare disease around the world.

We invite you to attend RareNET July, where Monica Ferrie (GSNV CEO and Board Member, RDI) will bring this news to light and open the conversation to us, the community, and what this means for us.

We look forward to seeing you there!






Genetic Alliance Australia Syndromes Without A Name - SWAN Australia

Join us to discuss what the recent adoption of at the 78th World Health Assembly means for us, the rare disease community, and its impacts!

12/06/2025

A message to the Genetic and Rare Disease Community:

The Science Within Us is a valuable education resource for Australian students to learn about genetics, diversity, and inclusion in a powerful new way.

Proudly co-designed with genomics and education experts and grounded in real lived experiences from our rare disease community this free resource helps to

🛎 Encourage the understanding and inclusion of genetic and rare disease in the classroom.
🛎 Promote the value of lived-experience across curriculum resources
🛎 Empower our genetic and rare disease community through understanding of our diversity
🛎 Encourage the next generation to explore career pathways in the field of genomics

Let’s put The Science Within Us in the hands of every teacher across Australia and build a more informed, inclusive future!

Share this link with your child’s teacher today:
👉 www.thesciencewithinus.org.au

Cystic Fibrosis Australia Thalassaemia & Sickle Cell Australia Syndromes Without A Name - SWAN Australia Genetic Alliance Australia Australian Sickle Cell Advocacy
Spinal Muscular Atrophy Australia Inc.

04/06/2025

In 2023, the Genetic Support Network of Victoria (GSNV) was the proud recipient of the Healthy Trajectories seed funding to develop the pilot of our digital learning resource The Science Within Us (SWU).

Read more from Project Lead Hollie Feller on the development of SWU, its co-design with young people living with rare disease and the power of human stories to educate and build the genomic literacy of Australian students.

💡Share this valuable platform with your primary and secondary schools visit www.thesciencewithinus.org.au to learn more.

Read the Healthy Trajectory Update here:
https://lnkd.in/g3Ap4mhy

A digital learning resource exploring our genetic identity. For Teachers For Students For Teachers Our program encourages critical thinking and open dialogue, equipping students with the skills to navigate complex issues surrounding genetic information with full support for their educators. Explore....

05/05/2025

Introduce your students to the science and real-world impact of genetics – a fascinating area of human health.

The Science Within Us is a FREE digital program tailored for Years 5–10 designed to:
🧬 Help students understand genetic and rare diseases
🧬 Align with science, health & humanities curriculum
🧬 engage students through a safe and easy to use online platform

Explore this FREE resource today visit thesciencewithinus.org.au