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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.

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.

03/09/2025

📚 Free Genetics Webinar: The Results Are In

You’ve received your child’s genetic testing results — but what do they actually mean?

Whether the findings are positive, negative, or uncertain, this free webinar will help you make sense of what comes next. It’s the second session in the Genetic Webinar Series — a partnership between Belongside Families and Genetic Alliance Australia

Hear from Dr Alan Ma, Clinical Geneticist at The Children’s Hospital at Westmead, and Maya Pinn, parent and advocate, as they explore how different outcomes can shape your child’s care, impact your family’s wellbeing, and guide the decisions ahead.

We’ll explore:
🔸 What different types of results mean — including positive, negative, and uncertain findings
🔸 What ‘variants of uncertain significance’ actually mean
🔸 When to seek a second opinion or re-analysis
🔸 How to manage the emotional impact of receiving results

🗓 Tue, 9 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/gswebinar0909

📺 Missed Session 1?
Register to receive the replay of Could It Be Genetic? here:
https://events.humanitix.com/gwsreplay

29/08/2025

📚 Free Genetics Webinar: Could It Be Genetic?

If you’ve ever wondered whether there might be a genetic explanation for your child’s health or development, you’re not alone.

Belongside Families and Genetic Alliance Australia are partnering to deliver this free webinar — the first in our Genetics Webinar Series.

Hear from Kathleen LeMarquand, Senior Genetic Counsellor, and Kim Bowan, parent of a daughter with SATB2 Associated Syndrome, as they share what to expect and how to prepare for the emotional and practical side of the diagnostic process.

We’ll explore:
🔸How to gather information to help doctors explore possible genetic causes
🔸Questions to ask your GP or paediatrician
🔸What to expect in a genetic consultation
🔸The different types of genetic testing and what they involve

Register to attend live or receive the recording:

🗓 Tue, 2 Sep, 12pm (NSW / AEST)
💻 Free to attend | Online via Zoom
🔗 https://events.humanitix.com/gswebinar0209

26/08/2025

📚Free Genetic Webinar Series

Navigating a genetic diagnosis for your child can be complex.

This free four-part webinar series hosted by in partnership with shares insights from parents and professionals to help you make sense of the genetic testing process, results, and the realities along the way.

Whether you’re just beginning to ask questions or managing daily life for your child with a genetic condition, you’ll find guidance and support to help navigate the journey.

Sessions in the Series
📚 Could It Be Genetic? — Tue 2 Sep, 12pm
📚 The Results Are In — Tue 9 Sep, 12pm
📚 Navigating Systems — Tue 16 Sep, 12pm
📚 Shaping the Future — Tue 23 Sep, 12pm
💻Online via Zoom | All times based on NSW / AEST

🔗 Register to attend live or receive the replay⁠:
bit.ly/BF-Genetic-T325

21/08/2025

Navigating a genetic diagnosis for your child can be incredibly complex.

To support parents and carers on this journey, Belongside Families and Genetic Alliance Australia are partnering to deliver a free four-part webinar series.

Across September, you will hear from genetic specialists and parents with lived experience as they share insights to help families make sense of the genetic testing process and prepare for both the emotional and practical realities of the journey ahead.

Sessions in the Series
📚 Could It Be Genetic? Tue 2 Sep, 12pm
📚 The Results Are In: Tue 9 Sep, 12pm
📚 Navigating Systems: Tue 16 Sep, 12pm
📚 Shaping the Future: Tue 23 Sep, 12pm
💻Online via Zoom | All times based on NSW / AEST

🔗 Register to attend live or receive the replay: bit.ly/BF-Genetic-T325

07/08/2025

🌟 This week (August 3–9) is National Eosinophilic Week! 🌟

Ever heard of an eosinophil? It’s a type of white blood cell involved in immune responses. When too many build up in parts of the body, they can cause inflammation, pain, and long-term tissue damage — this is what happens in eosinophilic diseases.

This week, we’re recognising all those living with eosinophilic diseases and shining a light on the important work of ausEE Inc. improving lives through support, evidence-based info, advocacy, and research. 💜 Learn more at 👉 www.eosaware.com

💡 Look out for landmarks lighting up in pink and purple across Australia and NZ this week as part of the campaign — but you don’t need a big platform to make an impact. Here’s how you can get involved:

✅ Share a post
✅ Start a conversation
✅ Take on the this Friday, 8 August — skip the 8 most common allergenic foods (milk, egg, wheat, soy, peanut, tree nut, fish & shellfish)
✅ Help raise awareness that eosinophilic diseases exist — and deserve visibility

🔗 www.top8challenge.com
🔗 www.eosaware.com

03/07/2025

Are you the parent or carer of a child (including adult children) with a genetic neurodevelopmental condition?

Join researchers from the University of Technology Sydney at an upcoming half-day workshop to help shape a digital tool for other families as they learn about their child’s genetic diagnosis.

Workshops will be held in-person in Sydney or Melbourne and others will be online. There will be a combination of small and large groups. Your insights could help create a practical tool with balanced information – highlighting both strengths and potential challenges – to support an informed and hopeful path forward.

You are eligible if:

• You are the parent or carer of a child with a genetic neurodevelopmental condition
• You are aged over 18
• Your child is of any age (including adult children)

👉 Click https://nurturenextgen.research.uts.edu.au/ or follow the QR code to find out more and express your interest.

-based -centred

02/06/2025

🌟 World Haemochromatosis Week | 1–7 June 2025🌟

Most people know anaemia causes tiredness and lethargy from too little iron in the blood. But did you know the same symptoms can occur from too much iron stored in the body?

Haemochromatosis, or iron overload, is Australia’s most common genetic disorder. It’s easy to test for, simple to treat, but tragic to ignore.

💡 Learn more at www.ha.org.au

This week, look out for iconic landmarks lighting up red across Australia in support of awareness! Let’s work together to beat the iron overload.

Australia

Address

384 Victoria Street
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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