Genetic Alliance Australia

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 💙

27/05/2026

Sharing this exciting work from Cure CASK Australia and collaborators exploring the potential of patient-derived organoids, or “mini brains in a dish”, to help transform rare disease research and therapy development.

For many rare conditions, one of the biggest challenges is the lack of accurate disease models to better understand what is happening biologically and to test potential treatments. Technologies like organoids are creating important new opportunities for more personalised and targeted research approaches.

Importantly, this also demonstrates the pivotal role rare disease organisations and families play in shaping and driving research forward!!!

Congratulations to Cure CASK Australia, The University of Queensland, the CASK Coalition, and the AMAZING families helping lead this important work forward. Giovi Moschoudis you inspire us! ❤

Organoids are miniature tissue or organ models formed by stem cells (including pluripotent stem cells, tissue-specific adult stem cells, etc.) or progenitor cells in an in vitro three-dimensional culture system, which possess structural features and partial functions analogous to their corresponding...

21/05/2026

We know many families across the rare condition and disability community are feeling anxious and uncertain about the proposed NDIS changes and what they may mean for their child and family.

Sharing this thoughtful and timely session for families from our friends Belongside Families. ❤

Many families are feeling the emotional toll of the proposed NDIS changes.

So much is being reported in the media. A lot of worrying information is being shared online. There are still many unanswered questions, and it may be some time before families know what these changes will mean for their child and family.

This kind of uncertainty is exhausting.

That’s why Belongside Families has invited psychologist Mitchell Woods from Mura Psychology to join us for a free webinar on Managing Stress & Uncertainty During NDIS Changes.

This session won’t provide advice on NDIS policy or funding. Instead, it will focus on practical strategies to help you manage ongoing stress, look after yourself, and navigate difficult periods when so much feels outside your control.

📅 Mon 25 May
🕗 8pm NSW time
💻 Online webinar
👤 For parents and carers of children with disability, developmental delay, Autism, rare and genetic conditions.
Professionals supporting children and families are also welcome.
🎥 Register to attend live or to receive the recording
🔗 Visit https://events.humanitix.com/infosession2505