Genetic Support Network of Victoria (GSNV)

19/02/2026

This year’s European Conference on Rare Diseases & Orphan Products will once again provide a unique forum bringing together people living with a rare disease, patient representatives, policymakers, researchers, clinicians, and industry to achieve policy-relevant outcomes.

will mark a key milestone in the inclusive, multi-stakeholder process towards a European Blueprint for Rare Diseases.

Be part of a collective effort to shape Europe’s rare disease agenda and drive lasting change for people living with a rare disease.

📅 3–4 June 2026
📍 Prague & online (hybrid)
👉 Take part & register here: https://go.eurordis.org/ecrd-fb

Register before 26 February 2026 to benefit from exclusive Early-Bird rates.

view the program here: https://www.rare-diseases.eu/programme-2026/

18/02/2026

share their visions for the next decade:

"By 2036, people will be able to enter the genetic health system easily and directly. Improved digital health systems will streamline access.

Testing will be flexible and tailored: individuals can choose from minimal testing, broader multi‑question testing, or comprehensive panels, with the ability to receive updates as scientific knowledge advances.

Technology will enhance communication, allow ongoing monitoring, and connect individuals to additional services and resources, supporting a more seamless experience.

The major change from 2025 is the elimination of fragmentation and underfunding. The system will be able to provide timely, high‑quality care, including effective treatments for conditions that were once debilitating."

📌Join Us February 27th as we share diverse perspectives on how the next decade should look to ensure our health system serves our unique health needs

REGISTER NOW: https://events.humanitix.com/the-gsnv-rare-disease-day-2026

16/02/2026

We asked Sarah Powell, CEO of what a 2036 health system will look like.

Her response:

"There will be an online support program... where patients are given all their options and can choose their own pathway.... so they can make informed decisions.

There will be plenty of publicly funded genetic counsellors to support via telehealth. Genetic Counsellors will be able to provide comprehensive patient follow up across many years following a diagnosis of a gene variant.

We will be able to use a data system to ensure every patient with a genetic variant is kept up to date with changes/recommendations for risk management or when new and useful information comes to light. There will be a simple way to inform relatives of genetic variants in families.
.. suites of co-designed resources.. will grow to ensure that the support is tailored for and reaches those in culturally and linguistically diverse groups or those without digital literacy. There will be dedicated information and tailored services for Aboriginal and Torres Strait Islander people that will be culturally safe and appropriate. In addition, people in niche high-risk for cancer populations such as younger women and LGBTQIA+ will have dedicated support groups and resources to support them"

📌 Friday 27th February JOIN US and hear more insights from Sarah Powell
Registrater Today: https://events.humanitix.com/the-gsnv-rare-disease-day-2026

Rare Disease Day

16/02/2026

👏 What an extraordinary panel of clinical and lived experience experts!

JOIN US Friday 27th February as we come together for to celebrate and acknowledge the rare disease community and our future-focused theme.

Our expert panel shares insights into how our future healthcare system will deliver innovation and digital transformations whilst responding to our human need for connection and a person-centred care approach.

What does the next decade look like for people living with genetic, undiagnosed and rare disease...

Register your spot for this free event: https://events.humanitix.com/the-gsnv-rare-disease-day-2026

10/02/2026

FEBRUARY 11th - International Day of Women and Girls in Science

‼️ Women continue to be underrepresented in scientific research worldwide. In 2022, just 31.1% of researchers were women, highlighting persistent gender gaps in the field. - UN

Watch our video 👇 promoting the opportunities and careers in genomics showcasing the contributions of astounding women in these fields

👉 Go to www.thesciencewithinus.org.au register your school and support Australian students to learn about genomics and a myriad of employment pathways in this exciting STEM field.

https://youtu.be/9sRibzh4PGI?si=A3dnBdCmIpXmkh_R

The launch trailer from the Science Within Us digital educational resource.A snapshot showcasing examples of some exciting careers in genomics. For more inf...

09/02/2026

Rare Disease Day 2026 | Shaping the Future of Care

📅 Friday 27 February 9:30am - 12pm

Join us as we bring together diverse voices from across our genetic, undiagnosed and rare disease community to imagine what healthcare could and should look like by 2036.

This year’s conversation looks ahead to a future where rare disease care is delivered as a connected, person-centred system, designed around what matters most to people with lived experience.

You’ll hear from leaders, innovators and advocates as we explore how lived experience, clinical expertise, policy, research, data and innovation must come together to build solutions with communities, not for them.

Morning tea and refreshments provided

🔗 Registrations now open:
https://lnkd.in/giKWV-Bs

05/02/2026

February 28th is Rare Disease Day

The GSNV invites schools and families to explore The Science Within Us an Australian education platform that brings genetics and rare disease learning into the classroom in age-appropriate, engaging and meaningful ways.

The Science Within Us helps students discover the incredible diversity that exists within our population, showing that difference is a natural part of being human.

Through science-based learning, students gain a deeper understanding of , and lived experience and how these shape people’s lives in unique ways.

Together, we can empower young Australians to:
🔹 build scientific and health understanding
🔹 develop empathy, respect and inclusive thinking
🔹 become confident advocates for diversity and equity

When students understand the science within us all, they learn to value difference, challenge stigma and help shape a more compassionate and inclusive future.

For more information and to register your school visit www.thesciencewithinus.org.au

VCE Biology Teachers' Group Victorian Teachers Online Community Middle Years Victorian Science Teachers’ GroupScience Teachers' Association of Victoria Inc (STAV)

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....

04/02/2026

is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease.

This year we host our community event on Friday 27 February and welcome our diverse community to come together and hear experts and lived experiences that can shape equity and opportunities for us all.

for more information on our upcoming event.

19/01/2026

An update on the Childhood Dementia Global Consensus Project.

In November 80 participants joined the Webinar live and another 80 watched the recording. Our international Steering Committee is now established and guiding the process.

Our first survey closed on 31 December with strong engagement:
📌180 clinicians, researchers and community representatives
📌from 36 countries registered,
📌 138 completed responses which we're now analysing.

We're on track to launch Round 2 in February and Round 3 in March, with preliminary findings expected by May 2026.

Watch the November webinar:
https://www.youtube.com/watch?v=6YNWoP30i6Q

This webinar brought together stakeholders from around the world to introduce the Childhood Dementia Global Consensus Project Delphi Study — an initiative to...

19/01/2026

Welcome to THE A-MAZE-ING BRAIN!

Explore an interactive brain-shaped maze made by kids who think differently.

Where: ArtPlay
When: Friday 23 January, 2pm and Saturday 24 January, 1:30pm

tep inside and explore activities that light up your brain. Inside the maze, you might hear stories, see yourself in funny ways, get a little lost, then find your way out. Each brain is special and unique, and everyone imagines their brain differently. Are you ready to experience A-Maze-ing Brain!?

Developed by visual artist Louisa Bufardeci, childhood dementia researchers Ya Hui Hung and Roshan Dhillon, and advocate Deanna Carpino, this project bridges art, science and lived experience. It raises awareness of childhood dementia and empowers children to speak up for their well-being. This interactive art installation invites children to share their stories through art, connecting with each other and the public in a fun, creative way.

This project is part of ArtPlay's New Ideas Lab - a program that develops new creative experiences for children over three stages with collaboration from artists, children and audiences alike. Please note that by attending one of these programs you will be part of a work in progress and helping to dream up something totally unique and exciting.

4.6 ⭐ · Art center in the City of Melbourne, Australia

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!