SATB2 Connect

28/02/2026

A celebration worthy to be shared on this special day,
Associate Professor Elizabeth Emma Palmer has been named and it's wonderful to have Emma on our Research Advisory Committee at SATB2 Connect along with Professor Natalie Munro, Professor Iva Strnadová, Dr Yu-Wei Ryan Chen, Dr Rebecca Sutherland, Professor Omid Kavehei, Dr Lauren Parsons, Dr Dave Parsons, Professor Alison McEwen along with an advisory committee; Dr Ali Haydar Göktoğan, Dr Laurel Mimmo, Dr Abbie Najjarine Biomechanical Podiatrist, Katrina Harrison and our amazing volunteers who without them Connect cannot do what our community needs! Sabrina, Wesley, Kavya, Rachel, Claire, Pranjali, Kevin, Sophie, Daniella, Sharon, Shraddha, Anushua.
Thank you for all you do for our !
Rare Disease Day Rare Voices Australia Rare Diseases International Closed family group:SATB2 Connect Family Group Australia & New Zealand & SATB2 Connect Family Group Asia

20/02/2026

Attention 🔊Survey alert: submit your response on modernising the referral pathways.
Survey will close on Thursday 6th March 2026.

People living with rare genetic conditions require a closer look at how referrals are made, and distributed. This is an opportunity to share your thoughts on the current process.

https://consultations.health.gov.au/medicare-benefits-and-digital-health-division/modernising-referral-pathways/consultation/intro/hrln

The site lists consultations that are run by the Department of Health, Disability and Ageing. On this site you can find, share or take part in consultations.

28/08/2025

🌟 Upcoming Free Webinar: Could It Be Genetic?

Proud to share that our Director, Kim Bowen, will be presenting in this important webinar hosted by Belongside Families and Genetic Alliance Australia.

If you’ve ever wondered whether a child’s health or development challenges could have a genetic explanation, this session is for you.

Hear from Kathleen LeMarquand, Senior Genetic Counsellor and Bowen mother to two beautiful children navigating complex care needs.

Together, they’ll discuss what to expect and how to prepare for both the emotional and practical side of the diagnostic journey.

Tuesday 2nd September 2025 @ 12pm (NSW/AEST)

Topics include:
💙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.

This free webinar is open to parents, caregivers, and professionals. Don’t miss this chance to learn, connect, and feel supported. Register using the link: 🔗 https://lnkd.in/gHvRGGEj

📚 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

21/08/2025

Today on SATB2 Awareness Day, we shine a light on this rare condition, the families it touches, and the power of awareness to create change. Every story matters, and by amplifying voices we can build stronger, more inclusive futures together 🧡💙💛💚 Birthday shout out to Dr Yuri Zarate 🧡Thank you for your dedication to our community.