Genetic Alliance Australia

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.

🦓 Rare Disease Day 2026: Care Connect Cure is a space for families too.If you’re wondering whether this event is right f...
19/02/2026

🦓 Rare Disease Day 2026: Care Connect Cure is a space for families too.

If you’re wondering whether this event is right for you and your family, the answer is yes.

Attending events can feel overwhelming, especially when you are caring for a child or young person living with a rare condition. The Rare Diseases NSW team have designed Care Connect Cure to feel welcoming, inclusive and supportive for families, not just professionals.

💛 Activities for children and young people

Captain Powers and Captain Smurfette from the Starlight Foundation will be joining us to bring fun, interactive activities for children and young people throughout the morning.

✨ Highlights families may especially value

🗣️ Rachel Callander Workshop (9:30am – 11:00am)

A practical and reflective masterclass exploring compassionate communication, storytelling and ways to reduce trauma and build connection in healthcare and everyday conversations.

🌱 RarePower Interactive Session

Learn about practical initiatives that support families, including Rare Passport, SIBS supports, health literacy tools and new projects helping people get involved and shape change.

💬 Lived experience speakers

Hear directly from people living with rare disease and community leaders sharing real stories about integrated care, connection and advocacy.

🌏 GeneEQUAL session

Discover co-designed resources supporting accessible, respectful and inclusive genetic healthcare for people with intellectual disability and their families.

✔️ Free to attend

✔️ Online access available

✔️ Travel bursaries to help reduce barriers

✔️ Accessibility supports in place

Travel bursary information: https://rarediseasesnsw.au/home/news/regional-nsw-travel-bursaries/

Whether you join in person or online, you are very welcome.

📍 UNSW Health Translation Hub, Randwick

📅 27–28 February 2026

🔗 Register: https://events.humanitix.com/rare-disease-day-2026-care-connect-cure

Please share with families or communities who might benefit from being part of this space.

Are you in Victoria? Join Genetic Support Network of Victoria this Rare Disease Day as they bring together diverse voice...
19/02/2026

Are you in Victoria? Join Genetic Support Network of Victoria this Rare Disease Day as they bring together diverse voices from across Australia’s genetic, undiagnosed and rare disease community to imagine what healthcare could and should look like by 2036.

🧬 There's still time to register for this free, in-person event on Friday, 27 February. RSVP by this Friday (20 February)! https://events.humanitix.com/the-gsnv-rare-disease-day-2026

The event will bring together people with lived experience, families, clinicians, researchers and system leaders to imagine what an Australian rare disease health system could look like by 2036 and how we can co-design it together. The event will explore:
• Equity and access
• Innovation in genomics, artificial intelligence and digital health
• Improved diagnostic journeys, mental wellbeing and long-term care
• Keeping the consumer voice central in every decision

Keynote panel includes:
• Sarah Powell, CEO, Inherited Cancers Australia
• Dr Erin Evans, CEO, InGeNa
• A/Prof Ali Archibald, Chief Clinical Officer, GenoCare
• Maya Pinn, Lived Experience Advocate, Syndromes Without A Name (SWAN) Australia
• A/Prof Danya Vears, Social Scientist and Ethics Researcher, Murdoch Children’s Research Institute/Deakin University

🦓 Rare Disease Day 2026: Care Connect CureGenetic Alliance is proud to partner with the Rare Diseases NSW team in suppor...
10/02/2026

🦓 Rare Disease Day 2026: Care Connect Cure

Genetic Alliance is proud to partner with the Rare Diseases NSW team in supporting Rare Disease Day 2026, a free, multi-day event bringing together people living with rare disease, families, clinicians, researchers, students and sector partners.

We welcome all families, individuals, rare supporters and those who are interested in learning more!

📍 Where: UNSW Health Translation Hub, Randwick Health & Innovation Precinct
📅 When: 27–28 February 2026
💻 How: In-person and online
🎟️ Cost: Free to attend
🔗 Register: https://events.humanitix.com/rare-disease-day-2026-care-connect-cure

Hear from Rachel Callander who will deliver a powerful keynote, followed by a practical and reflective masterclass for healthcare professionals and families.

Through storytelling, evidence-informed frameworks, and lived experience, she challenges deficit-based narratives in healthcare and teaches compassionate, empowering communication that reduces trauma and builds connection.

Across the program, the event will feature lived experience voices, clinical and research leaders, panel discussions, and interactive sessions focused on improving diagnosis, care and innovation in rare disease.

🚗 Travel bursaries available - please apply

Travel bursaries are available for people living in rural and regional NSW, including people living with a rare disease, parents, carers and family members, and healthcare professionals.

👉 Register now: https://events.humanitix.com/rare-disease-day-2026-care-connect-cure
👉 Travel bursary information: https://rarediseasesnsw.au/home/news/regional-nsw-travel-bursaries/

Please share with colleagues, communities and networks who may be interested.

Rare Disease Day 2026 is hosted by Rare Diseases NSW and Genetic Alliance Australia, in partnership with UNSW and Sydney Children's Hospitals Network, with support from NSW Health, Belongside Families, SATB2 Connect , & SCN2A Australia .

November is 22q Awareness Month 💜Each year in November, the international 22q11.2 community joins together to increase u...
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.

Genetic Alliance Australia is proud to support this important research by our colleagues at Murdoch Children's Research ...
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!

Our wonderful friends at the Australian NPC Disease Foundation Inc are co-delivering a unique workshop series designed t...
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! 👏 💗

Research Opportunity!Our fellow Rare Genetic friends are capturing quality of life for people with rare genetic conditio...
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

What does the future look like for families navigating a genetic diagnosis?The final webinar in the free Genetic Webinar...
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

⏳ Every day counts for families living with lysosomal storage disorders.The 3rd Annual Lysosomal Disease Summit (24–26 O...
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/

👏 Celebrating this brilliant new initiative from the team at Genetic Support Network of Victoria - first session this We...
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

Address

Sydney, NSW
2010

Opening Hours

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

Telephone

+61292958359

Website

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