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Genetic Alliance Australia

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Genetic Alliance Australia

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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.

01/11/2026

Join us for the Consumer and Patient Advocate Session at the AGCTS 2026 Biennial Meeting, designed for people living with rare genetic conditions, their families and the advocacy groups that support them.

The session brings together experts in gene therapy development and translation. It starts with an overview of the technology and how therapies are developed, then moves to a panel where the audience can ask about preclinical development, translation and clinical implementation in Australia and internationally.

Speakers include Leszek Lisowski (CMRI, Gene2Cure Foundation), our CEO Emma Bonser and Steve Hille. Prof. Krzysztof Bankiewicz and Prof. Damjan Osredkar join the panel.

📅 Wednesday 11 November 2026, 3:30 pm to 5:00 pm
📍 In person at Melbourne Connect, 700 Swanston Street, Carlton VIC

Registration a must as numbers are capped: https://www.eventbrite.com.au/e/agcts-14th-biennial-meeting-consumer-and-patient-advocate-session-tickets-2003325000003?aff=oddtdtcreator

Please share this with any family or advocacy group that should be in the room.

andCellTherapy

01/11/2026

What does person and family centred genetic care look like?

The future of genetic care needs to reflect what people and families actually need: what has helped, where support has been missing, and what would make a difference.

The **Mapping the Genetic Patient Journey** project is gathering experiences to help inform how genetic services in NSW are designed and delivered in the future. It is led by the University of Sydney with the Patient Experience Agency.

At GAA, we want our community’s experiences to help inform this work.

**You’re invited to complete a 10–15 minute survey if you:**

- Have accessed genetic testing or genetic services.
- Are a family member or carer of someone with a genetic condition or rare disease.

This survey welcomes responses from across Australia, particularly from rural and remote communities and people from culturally and linguistically diverse backgrounds.

Thank you for sharing what matters to you.

Survey link here: https://sydney.au1.qualtrics.com/jfe/form/SV_8ob6A4I2CXEjQjA

12/10/2026

What can a palliative approach offer people living with rare disease and their families, from diagnosis onwards?

Join us for the October RareNET forum with Gail Hilton, Director of Programs at the Childhood Dementia Initiative, to explore a palliative approach through the experiences of children with childhood dementia and their families.

We’ll consider how care teams can support quality of life, plan for changing needs and recognise the grief and loss families may experience along the way.

Together, we’ll explore:

• What a palliative approach means and when it can help.
• Why planning ahead and offering early grief support matter.
• How health, disability and education professionals can provide more coordinated, compassionate care.
• Practical training and support available for professionals working with families.

We recognise that discussions of palliative care, grief and loss can be deeply personal and may bring up difficult emotions. Please take part in whatever way feels right for you, including stepping away if you need to. You can also request support from our Genetic Health Navigator.

📍 Online and free
🕒 Thursday 15 October | 12–1 pm AEDT (Sydney/Melbourne time)
🎟️ Register: https://events.humanitix.com/rarenet-october-2026-forum

12/10/2026

Notice of Genetic Alliance Australia’s 2026 Annual General Meeting.

We warmly invite our members and supporters to join us as we report on the past year’s activities and finances and share our priorities for the year ahead.

📅 Monday 16 November 2026

🕑 2:00–2:45 pm AEDT (Sydney time)

💻 Online via Microsoft Teams

Register to receive the meeting link:

https://events.humanitix.com/genetic-alliance-australia-annual-general-meeting-2026

19/08/2026

Sharing your rare disease story can be powerful. But how do you decide what to share, when to share it and where your boundaries sit?

The next Rare Disease Disability Virtual Kitchen Table Peer Support Session will explore Safely sharing your rare disease disability story, with a welcoming space to connect, share experiences and learn from others who understand.

This session is facilitated by Rare Voices Australia (RVA) in partnership with RVA Partner, Genetic Alliance Australia

Wednesday 2 September

For people living with rare disease disability
12pm–1pm AEST

For caregivers of people living with rare disease disability
8pm–9pm AEST

These sessions can be particularly valuable if you are looking for connection and support, are newly diagnosed or navigating a new challenge, or don’t have a condition-specific community to connect with.

There is no pressure to share. You are welcome to listen, join the conversation, or share as much or as little as feels right for you.

Learn more and register:
https://rarevoices.org.au/rare-disease-disability-project/rare-disease-disability-virtual-kitchen-table-peer-support-sessions/

08/07/2026

⏰ Last days to apply for FER 2026

Research is stronger when the people and families most affected by it help shape the questions, priorities and outcomes.

The Family Engagement in Research Course is a fantastic opportunity for researchers, clinicians and people with lived experience to build the confidence, skills and shared understanding needed for meaningful research partnerships.

Importantly, this course is not only for people already connected to research. Full scholarships are available for people with lived experience who are not currently connected with a research team.

Your experience, questions and perspective matter. This course can help build the tools and confidence to bring that expertise into research in a way that feels meaningful, supported and practical.

Delivered by Healthy Trajectories in partnership with CanChild at McMaster University, the 10-week online program explores:

• Partnering with consumers and families in research
• Navigating the realities of collaborative research
• Applying family engagement principles in practice

Applications close 5pm AEST, Friday 10 July 2026.
Course begins August 2026.

Learn more and apply: https://healthy-trajectories.com.au/fer/

More information about scholarships is available in the brochure:https://healthy-trajectories.com.au/wp-content/uploads/2026/06/2026-FER-Brochure.pdf

25/06/2026

What would you change about the way genetic healthcare is delivered in NSW?

Have you or your family experienced genetic testing, genetic services, or the search for a genetic diagnosis?

Researchers from the University of Sydney, in partnership with The Patient Experience Agency and supported by Genetic Alliance Australia, are inviting people with lived experience of rare genetic conditions, and the families who support them, to help map the real-world genetic care journey across NSW.
Whether you've spent years searching for answers, waited for appointments or test results, navigated genetics services, or supported a loved one through the process, your experiences matter.

Supported by NSW Health, this project will use the insights of patients, carers and families to identify opportunities for improvement and directly inform ongoing work to strengthen the way people access and experience genetic testing, genetics services and genetic healthcare across NSW.
Because the people who use the system every day should help shape how it evolves.

📍 Online focus groups
💲 Participants reimbursed $40 per hour
📍 Open to eligible NSW participants

Your story could help improve the journey for future families.

Register your interest here:
https://sydney.au1.qualtrics.com/jfe/form/SV_5j6w5bT5cAUlfDg

15/06/2026

Connection changes everything.

Every day, people contact Genetic Alliance Australia at some of the most uncertain moments in their lives.

They may be searching for a diagnosis, trying to understand a condition that few people have ever heard of, navigating uncertainty, or simply looking for someone who understands.

For more than 30 years, we've helped connect people living with rare, genetic and undiagnosed conditions to trusted information, support, community and each other.

We've seen firsthand the difference these connections can make.

For many individuals and families, connection can be the difference between navigating rare disease alone and navigating it with support, understanding and hope.

This End of Financial Year, please consider making a tax-deductible donation to support this work. Because connection changes everything.

Donate before 30 June: https://geneticallianceaustralia.raiselysite.com/

All donations above $2 are tax deductible

04/06/2026

"You look fine."

Before you read any further, take 60 seconds to watch this trailer: https://youtu.be/J9qzJwj8O2s?si=9Juf4n89Q5hSYA4J

Created by filmmaker, comedian and sickle cell advocate J. Snow, *You Look Fine* is honest, funny, confronting and deeply human. It shines a light on the realities of living with sickle cell disease and challenges us to look beyond what we think we see.

And now it's coming to the Sydney Film Festival.

Ahead of World Sickle Cell Day (19 June), we're proud to support the Australian Sickle Cell Advocacy Inc - NSW Chapter team in sharing this powerful documentary and helping bring greater awareness to the lived experience of sickle cell disease in Australia.

We hope you'll watch it, share it, and if you're in Sydney, join us for a film that will make you laugh, cry, and see the world a little differently.

🎟️ Sydney Film Festival screenings
📍 Dendy Newtown Cinemas

• Sunday 7 June, 2:15pm
• Tuesday 9 June, 6:30pm

Tickets: https://www.sff.org.au/program/event/you-look-fine/

29/05/2026

As Cri du Chat Awareness Month comes to a close, we wanted to send some love to the incredible team at the Cri du Chat Support Group of Australia Inc. 💙

This passionate community has worked tirelessly to build connection, understanding, advocacy and belonging for individuals and families living with Cri du Chat syndrome across Australia.

We’ve loved seeing their joyful “Let’s Get Stripy!” campaign helping spark conversations about inclusion, individuality and the strength of community.

Cri du Chat syndrome (5p- syndrome) is a rare genetic condition caused by a deletion on chromosome 5. Every person’s journey is unique, and awareness matters because understanding leads to earlier support, stronger inclusion and more connected communities.

Thank you to the Cri du Chat community for everything you do for families, and for the compassion and hope you bring to the rare disease community more broadly.

Please help us celebrate and amplify their work as Awareness Month wraps up 💙

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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