Genetic Support Network of Victoria (GSNV)

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

26/02/2026

Education plays a vital role in building understanding, empathy and inclusion in our classrooms.

This , we invite educators to explore The Science Within Us an Australian education platform designed to support teachers in bringing and learning into the classroom in age-appropriate, curriculum-aligned and engaging ways.

The Science Within Us provides meaningful learning opportunities that help students understand human diversity, health and genetics, while encouraging thoughtful discussion around lived experience, equity and inclusion.

It supports teachers to create safe, informed learning environments where difference is recognised as a natural part of our community.

By embedding this learning, educators can help students:
🔹 strengthen health and scientific literacy
🔹 develop empathy, respect and inclusive perspectives
🔹 build advocacy skills and informed citizenship

When students are supported to understand the science within us all, they grow into learners who value diversity and contribute to a more compassionate and inclusive Australia.

Visit www.thesciencewithinus.org.au for more information and to register your school

23/02/2026

Meet the GSNV

The diversity of our of rare, genetic and undiagnosed conditions drives our passion, our purpose, and our vision for a better future.

This is the rare disease future we’ve been dreaming about:

🔹 A health system that is proactive, preventative and predictable

🔹 AI-powered connection and support that enhances quality of life

🔹 Health pathways built with the rare disease community, not around it

🔹 A system where no one feels isolated, invisible or left behind

This we’re opening the conversation wide featuring the patient lens alongside clinical, research and health perspectives to ask:

🔸 What could a truly , tech-enabled health system look like in 2035?

🔸 How can and strengthen community, not replace it?

🔸 What does the future hold when patient voice leads the design?

Join our in-person event on

📆 Friday 27 February

9.30am-12pm

📌REGISTER NOW:

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

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