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Genetic Alliance Australia

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Genetic Alliance Australia

Genetic Alliance Australia facilitates support for those affected directly or indirectly by genetic conditions or rare diseases

Do you know somebody affected by a genetic condition or rare disease? Contact Genetic Alliance Australia to receive updated information on the condition and be put in touch with other families. Genetic Alliance Australia holds numerous events, seminars and workshops throughout the year which will enable you to form close networks of friends and ensure that you are receiving the right support and information.

06/11/2025

Notice of Annual General Meeting 2025

Members and supporters are invited to Genetic Alliance Australia’s Annual General Meeting — a chance to reflect on our year, celebrate community impact, and look ahead to the work ahead.

🗓 Tuesday 3 December 2025
🕡 6:30 – 7:30 pm AEDT (Online)
💻 Register here: https://events.humanitix.com/genetic-alliance-australia-annual-general-meeting-2025/tickets

04/11/2025

November is 22q Awareness Month 💜

Each year in November, the international 22q11.2 community joins together to increase understanding of 22q11.2 Deletion and Duplication Syndromes - genetic conditions that can affect learning, speech, immunity, heart health, and mental health.

Across Australia and New Zealand, the 22q Foundation Australia and New Zealand - 22q Deletion and Duplication a lifeline connecting families, building awareness, and working with clinicians and researchers to ensure that people with 22q receive the understanding and care they deserve.

What makes this work even more remarkable is that it’s driven entirely by volunteers - families and advocates who know the realities of 22q and give their time so that others don’t have to walk the path alone.

🔗 Learn more: https://www.22q.org.au/newly-diagnosed-with-22q

Genetic Alliance Australia is so grateful to partner with you and support your incredible work.

30/10/2025

Genetic Alliance Australia is proud to support this important research by our colleagues at Murdoch Children's Research Institute - MCRI and Macquarie University. Understanding what people need to make informed choices about genetic screening is key to building equitable, person-centred care. 🧬 If you are aged 18-50 and living in Australia - please consider being part of this!

30/10/2025

Our wonderful friends at the Australian NPC Disease Foundation Inc are co-delivering a unique workshop series designed to be inclusive, creative, and a wonderful space for children to connect through art and imagination.

The A-maze-ing Brain! Dream Phase workshops are part of NeuArtica - a collaboration between biomedical researchers Ya Hui Hung and Roshan Dhillon, visual artist Louisa Bufardeci, and Deanna Carpino. Together, they create art projects about the brain with, and for, children, blending science, art, and lived experience.

In this workshop, children explore how they imagine their own brains through creative drawing and by building their own brain models. The project celebrates children’s natural curiosity and imagination — encouraging them to share how they see and experience their brains in their own unique ways.

Workshop details:
Event: A-maze-ing Brain! Dream Phase Workshops
Date: Saturday, 8th November 2025 and Sunday, 9th November 2025
Location: ArtPlay, Birrarung Marr, Melbourne
Registration: https://artplay.sales.ticketsearch.com/sales/salesevent/155629
Who for: Children with neurological or rare diseases, their siblings, and friends

WE LOVE THIS! 👏 💗

23/10/2025

Research Opportunity!

Our fellow Rare Genetic friends are capturing quality of life for people with rare genetic conditions and their carers!

Survey: How can we measure quality of life in people with rare genetic conditions and their carers?

So far over 100 Australians impacted by rare genetic conditions have filled in this survey to measure their quality of life. We need to increase this to 250 Australians to make a real difference.

The survey tests multiple ways of measuring quality of life. Doing this helps us understand which ways of measuring quality of life work best for people impacted by rare genetic conditions. This will help decision makers make good decisions about which tests and treatments for rare genetic conditions should be funded (e.g. through Medicare, the PBS).

If you have a rare genetic condition, or you are the parent/carer of a child or adult with a rare genetic condition, we invite you to participate in this survey. The survey should take between 30 and 45 minutes to complete.

Link to Survey https://q.surveys.unimelb.edu.au/jfe/form/SV_e3b0h2kWRrvTs7Y

22/10/2025

There's only 2 DAYS LEFT to get your tickets for SWAN’s Online Trivia Night for a Diagnosis! Their most important fundraiser of the year!

📅 Friday 24 October
🎟️ Tickets from $20: https://www.eventbrite.com.au/e/trivia-night-for-a-diagnosis-tickets-1690066537509?aff=oddtdtcreator

Can’t make it? You can still support SWAN families — donate instead! Every dollar makes a difference. 🙌
https://swan-trivia-fundraiser.raiselysite.com/

18/09/2025

What does the future look like for families navigating a genetic diagnosis?

The final webinar in the free Genetic Webinar Series from Belongside Familiesand Genetic Alliance Australiasteps back from the day-to-day to explore the bigger picture. Whether you’re curious about research participation, preparing for your child’s long-term needs, or finding ways to make your voice heard, this session will help you feel informed and ready for the road ahead.

Hear from Dr Emma Palmer, Clinical Geneticist at Sydney Children’s Hospitals Network and lecturer at UNSW, and Kris Pierce, Director of Consumer Involvement at Child Unlimited, UNSW and leading healthcare advocate.

Together, they’ll explore
🔸 Opportunities to get involved in research
🔸 Practical steps for preparing for changing support needs over time
🔸How families can contribute to advocacy and systemic change

🗓 Tue, 23 Sep, 12:00–12:45pm (NSW / AEST)
💻 Free to attend | Online via Zoom
🔗 Register to watch live or receive the replay:
https://events.humanitix.com/gswebinar2309

📺 Missed earlier sessions?
Register to receive the replays here:
https://events.humanitix.com/gwsreplay

15/09/2025

⏳ Every day counts for families living with lysosomal storage disorders.

The 3rd Annual Lysosomal Disease Summit (24–26 October 2025, Sydney) is where the lysosomal and metabolic community comes together to accelerate progress. We are so lucky to have this in the region - thank you Fabry Australia and all those working to make this happen.

This is a unique and growing platform year on year and a catalyst for:

🔬 Advancing research and innovation
🤝 Strengthening collaboration across disciplines and regions
💡 Sharing solutions that can change diagnostic and treatment pathways

With experts from Australia, the Asia–Pacific, and around the world, the Summit will address the biggest challenges in lysosomal disease diagnosis, treatment, and research - and explore how to bring real solutions closer to families who can’t afford to wait.

📢 Early bird registration closes 16 September!!

👉 Register now: https://web.cvent.com/event/f030af89-920b-4110-8a00-1a2f505ee255/summary

🔗 More information: https://lysosomaldiseasesummit.org/

15/09/2025

👏 Celebrating this brilliant new initiative from the team at Genetic Support Network of Victoria - first session this Wednesday 17th September.

IMPACT is a monthly workshop series designed to empower support groups, advocates, and community leaders across the rare, genetic and undiagnosed community.

Each session brings together leading researchers, practitioners and advocates, combining the latest evidence with lived experience. Attendees will leave with practical frameworks, research-driven tools and real-world resources to strengthen their groups and networks.

🌟 IMPACT focuses on:

Building capability and resilience among individuals and groups
Driving equitable access to information and resources
Promoting inclusion and diversity across health and community sectors
Strengthening the collective voice of those impacted by rare disease

Kicking off this September:

✨ Start with the Heart – Creating and Growing Your Online Support Group

📌 Led by Dr Jennifer Beckett (University of Melbourne, School of Culture & 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.

🔑 Takeaways include:

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 GSNV’s new Benchmarking Communities of Support plain-language guide

🗓 Wednesday 17 September | 12:00–1:00pm AEST
📍 Online via Microsoft Teams
💰 Free to attend
👉 Register now: https://events.humanitix.com/gsnv-s-impact-series

10/09/2025

📚 Free Genetics Webinar: Navigating Systems
Feeling overwhelmed by the NDIS, health or hospital systems after your child’s diagnosis? You’re not alone.

This free webinar in the Genetic Webinar Series from Belongside Families and Genetic Alliance Australia will help you feel more informed and prepared.

Hear from Lauren Buck, an experienced NDIS Navigator from Mito Foundation, who specialises in helping families access and navigate supports; Nika Kulaweera, Clinical Nurse Specialist and Rare Kids Care Navigator; and Helen Johnson, parent and advocate with decades of lived experience navigating complex systems.

Together, they’ll share practical advice and insights to help you:
🔸 Apply for the NDIS and navigate reviews
🔸 Work effectively with health professionals and services
🔸 Coordinate care across multiple systems

🗓 Tue, 16 Sep, 12:00–12:45pm (NSW / AEST)
💻 Free to attend | Online via Zoom
🔗 Register to watch live or receive the replay:
https://events.humanitix.com/gswebinar1609

Missed any of the sessions in our series?
Register to receive the replays here:
https://events.humanitix.com/gwsreplay

07/09/2025

Join us for the Annual Genetic Alliance Forum 2025
"Shared Strengths for Rare Futures" — at NSW Parliament House.

An inclusive evening
open to anyone supporting families, carers and communities and systems in rare
and genetic health — or anyone keen to learn more!

Hear from:
Advocate Danielle Lilley
(PPA2 Community/The Coroners Project) — community-led systems change

Dr Amali Mallawaarachchi (Australia's
first dual-trained Clinical Geneticist and Nephrologist, Garvan Institute of Medical Research )
— translating genomics to everyday care

Megan Maack
(CEO, Childhood Dementia Initiative e) — rare frameworks that scale

🗓 Wed 24 Sept 2025, 5:45–9:00pm
📍 NSW Parliament House, Sydney
🎙 Hosted by The Hon. David Harris MP
🔗 RSVP: https://events.humanitix.com/genetic-alliance-australia-forum-2025-shared-strengths-for-rare-futures

If you have something you'd like to share in our research and advocacy showcase at the
forum - email info@geneticalliance.org.au

With huge thanks to our sponsors: Alexion
Pharmaceuticals, Pfizer Australia & UCB Inc.

Address

Sydney, NSW
2010

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Telephone

+61292958359

Website

http://www.geneticalliance.org.au/contact.php

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