GeneEQUAL, Centre for Clinical Genetics, The Bright Alliance Building, Sydney (2026)

Q: What is the address?

Centre For Clinical Genetics, The Bright Alliance Building

06/05/2026

Members of our team recently had the opportunity to attend a culturally responsive training program in Brisbane.

The pilot program focused on respectful and effective engagement with Aboriginal and Torres Strait Islander Peoples in mental health settings.

We’re grateful for the knowledge shared and the space created for reflection, connection and learning. Sincere thanks to our GeneEQUAL CI Greg Pratt for the invitation, and to the CQU team for delivering a thoughtful and impactful program.

This trip also gave us the chance to spend time together. The GeneEQUAL team is a caring and committed group of people!

Iva Strnadova Natalie Roberts Skie Sarfaraz

04/05/2026

Following our first workshop, we came together again to keep the conversation going.

This second session built on what we learned in our first one. We had discussions about safety, trust, belonging, and what trauma‑informed support looks like in everyday life. People shared experiences, ideas, and self‑care strategies, and spoke about how powerful it feels to be truly listened to.

Co‑production is an ongoing journey.
We’re grateful to everyone who shared so openly, and we’re looking forward to continuing this work together at our third workshop later in May 💙

22/04/2026

Join us online at 12 pm!

In this webinar, hosted by the UNSW Disability Innovation Institute (DIIU), Iva Strnadová, Elizabeth Emma Palmer, Julie Loblinzk Refalo OAM and Skie Sarfaraz will share:

* What’s going wrong in health care transitions and why it matters

* What My Health Choices My Way is doing to address this gap

* How lived‑experience leadership is shaping the solutions

When? 23 April 2026
What time? 12–1pm (AEST)
Where? Online via Zoom

Register here:
https://events.humanitix.com/my-health-choices-my-way-how-we-are-transforming-health-care-transitions-for-young-people-with-intellectual-disability

This session is for anyone working in health, disability, education or advocacy, and for anyone who believes young people with disability deserve better!

22/04/2026

The My Health Choices My Way webinar is TOMORROW!

*Tag 3 people who should join the webinar
*Register here: https://tinyurl.com/myhcmyw

My Health Choices My Way: How We Are Transforming Health Care Transitions for Young People with Intellectual Disability

In this webinar, our team will share:
*What the problem is and why it matters
*What we are going to do about it
*How we are making sure the people most affected are leading the way

When? Thursday 23 April 2026
What time? 12–1pm (AEST)
Where? Online via Zoom

21/04/2026

Only 2 days until the My Health Choices My Way webinar!

*Tag 3 people who should join the webinar
*Register here: https://tinyurl.com/myhcmyw

My Health Choices My Way: How We Are Transforming Health Care Transitions for Young People with Intellectual Disability

In this webinar, our team will share:

*What the problem is and why it matters
*What we are going to do about it
*How we are making sure the people most affected are leading the way

When? Thursday 23 April 2026
What time? 12–1pm (AEST)
Where? Online via Zoom

20/04/2026

📣 Only 3 days to the first My Health Choices My Way webinar!
Register here: https://tinyurl.com/myhcmyw

My Health Choices My Way: How We Are Transforming Health Care Transitions for Young People with Intellectual Disability

In this webinar, our team will share:

*What the problem is and why it matters
*What we are going to do about it
*How we are making sure the people most affected are leading the way

When? 23 April 2026
What time? 12–1pm (AEST)
Where? Online via Zoom

16/04/2026

GeneEQUAL People - Meet the Team!
Part 4: Professor Iva Strnadová

Professor Iva Strnadová from UNSW is a passionate researcher, educator, and advocate—and a key leader of the GeneEQUAL program.

Her work focuses on improving access to genetic healthcare for people with intellectual disabilities by ensuring services are inclusive, respectful, and centred on individual needs. At the heart of her research is the belief that people with lived experience must lead the conversations that affect their lives.

Through GeneEQUAL, Iva works alongside people with disabilities, families, and communities to create research that drives meaningful change and supports self‑determination, dignity, and better health outcomes.

09/04/2026

Through our work in the GeneEQUAL program, we heard about a major gap in health care.

When young people with intellectual disability move from children’s to adult health services, things do not go so well.

Families, advocates and young people told us support can disappear, information is not shared, and systems ar not designed to include people with disability.

That is why we are sharing this webinar about a new project: "My Health Choices My Way: How We Are Transforming Health Care Transitions for Young People with Intellectual Disability"

This research program is funded by the Australian Government and led by people with intellectual disability — not just as participants, but as researchers, decision‑makers and leaders.

In this webinar, you will hear about:
• What is going wrong in health care transitions
• What needs to change
• How lived experience is leading the solutions

When? 23 April 2026
What time? 12–1pm (AEST)
Where? Online via Zoom

Register here: https://events.humanitix.com/my-health-choices-my-way-how-we-are-transforming-health-care-transitions-for-young-people-with-intellectual-disability

✨ For anyone who believes young people with intellectual disability deserve better.
Iva Strnadova

01/04/2026

Did you receive our latest GeneEQUAL Newsletter?

Our newsletter highlights the incredible work happening across the GeneEQUAL project, created with and for people with intellectual disability.

This edition includes:

1. The world’s first Easy Read booklet about intellectual disability, written by people with lived experience

2. GeneEQUAL's participation at Rare Disease Day 2026

3. Skie's poem

4. Jennifer's paper about genetics education for high school students with intellectual disability

5. Our new project: My Health Choices My Way

6. An invitation to a webinar hosted by the Disability Innovation Institute

Read our Easy Read newsletter here:
https://geneequal.com/stories/geneequal-newsletter-2026-volume-1/

Links to

* Life with Intellectual Disability booklet: https://geneequal.com/genetic-resources/life-with-intellectual-disability/

* Skie’s poem: https://geneequal.com/stories/life-with-intellectual-disability/

* Jennifer's research paper: https://www.nature.com/articles/s41431-026-02041-w

If you want to receive newsletters and information about GeneEQUAL, join our mailing list!

https://geneequal.com/geneequal/connect/

29/03/2026

GeneEQUAL Publication Highlight

The GeneEQUAL team is excited to celebrate Karen‑Maia Jackaman’s publication, which explores how teachers understand and support genetic health literacy for high school students with intellectual disability. Her work shines a light on the experiences of educators and the impact this knowledge can have on students’ confidence and wellbeing.

Karen‑Maia Jackaman’s research highlights how important it is for students with intellectual disability to have access to meaningful genetics education. Many of these students want to understand more about their health and genetic conditions, but they need the right support at school to build that knowledge.

By speaking with teachers already teaching genetics in inclusive classrooms, Jackaman found that creative teaching strategies, better resources, and whole‑school support make a real difference.

Her key message is clear: schools need accessible, engaging online tools and professional learning so every student can build their genetic literacy and feel empowered in their healthcare journey.

You can read the article here: https://www.nature.com/articles/s41431-025-01865-2

26/03/2026

GeneEQUAL people - meet the team!
Part 3: Skie Sarfaraz

Meet Skie Sarfaraz, a passionate Community Disability Team Leader and Lived Experience Researcher who is making an incredible impact for people with intellectual disability.

Skie brings together her lived experience, her First Nations cultural identity, and her commitment to co-design to ensure that research and support services are inclusive and genuinely person centred. She has been an Associate Investigator on the GeneEQUAL project since 2021 and a Chief Investigator on My Health Choices My Way since 2025. Skie has also written a poem about her lived experience, which has been published on the NSW Health website. You can read Skie’s poem here: https://geneequal.com/stories/life-with-intellectual-disability/

She specialises in translating complex information into Easy Read and accessible resources to empower people to understand their health and rights.

Skie has:
• Published research in leading academic journals
• Written for the INSPIRE Disability edition
• Presented at national events, including Parliament House
• Supported families as a Kindship Ambassador

Her leadership, advocacy, and community voice are helping create a more inclusive future for people with intellectual disability.

18/03/2026

This week is Brain Awareness Week 2026!

Brain Awareness Week is a global event led by the Dana Foundation.

It helps people learn more about the brain and why brain health matters.

For many people with intellectual and developmental disabilities, understanding how the brain works can help
- create better support
- reduce stigma
- build more inclusive communities.

Why do we care?

By learning more about the brain, we help build a community where:

-People feel valued

-Differences are understood

-Everyone can belong

This video explains brain awareness in a simple and engaging way.

Watch it here: https://youtu.be/j8gSV0gIxv4

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