GeneEQUAL

GeneEQUAL GeneEQUAL is a research program to help people with intellectual disability get better health care.

08/06/2026

Happy 40th Birthday, Self Advocacy Sydney!
For 40 years, you have helped people with intellectual disability to speak up, make choices, and be heard.
We are so grateful to be a small part of your journey.

Happy Birthday SAS!

GeneEQUAL People - Meet the Team!Part 5: Jackie Boyle Jackie is a Genetic Counsellor and Clinical Nurse Consultant with ...
04/06/2026

GeneEQUAL People - Meet the Team!
Part 5: Jackie Boyle

Jackie is a Genetic Counsellor and Clinical Nurse Consultant with over 17 years of experience supporting people with inherited intellectual disability and an integral member of the GeneEQUAL team. She is passionate about promoting healthcare that is inclusive, person‑centred, and respectful, and works to reduce barriers so that everyone can access care that meets their needs.

Through both her clinical work and involvement in research collaborations, Jackie is committed to making genetic information more accessible and meaningful. She is known for her compassionate approach, creating a supportive space where people feel comfortable asking questions, sharing their experiences, and making decisions that are right for them.

GeneEQUAL was proud to share our Life with Intellectual Disability Easy Read booklet at our third Trauma Informed Co-Pro...
02/06/2026

GeneEQUAL was proud to share our Life with Intellectual Disability Easy Read booklet at our third Trauma Informed Co-Production Workshop on 29 May.

Developed over nine months, this resource was co-authored by our Mentoring Group of eight people with disability, who guided the content, language, and direction through their lived experience.

More than 40 people with intellectual disability contributed feedback through workshops and engagement groups, helping ensure the booklet reflects a wide range of perspectives.

The final resource highlights both strengths and challenges, and is presented in Easy Read format to support accessibility and understanding.

It was an honour to share this work as part of our ongoing commitment to inclusive, co-produced resources.

GeneEQUAL was so honoured to be invited to Waiben (Thursday Island) to take part in a yarning circle on genetic healthca...
17/05/2026

GeneEQUAL was so honoured to be invited to Waiben (Thursday Island) to take part in a yarning circle on genetic healthcare with Torres Strait Islander and Aboriginal community members.

A heartfelt thank you to everyone at Torres Health for the warmth of your welcome on Country. We acknowledge the Traditional Owners of Waiben and pay our deep respects to Elders past and present.

Over three days, our GeneEQUAL team—Greg Pratt, Associate Professor Elizabeth Emma Palmer, Skie Sarfaraz and Professor Iva Strnadová—came together with the Central Queensland University Integrated Genetic Health Care team and Genetic Health Queensland to sit, listen and learn.

We heard powerful insights from health workers, support workers, Torres Strait Islander health workers, and care coordinators about what genetic healthcare needs to look like to truly work for community. This included:
• Information available in local languages, including Creole
• Community champions and sharing lived experiences to help reduce stigma
• Culturally safe spaces for diagnosis, with support people present
• Referral pathways that genuinely work for rural and remote communities

We’re leaving Thursday Island with full hearts, strong partnerships and a long to-do list.

We can’t wait to return and continue co-designing resources together—working in partnership, and always on community terms.

Eso. Thank you.

Register to this free event using the link in our description!
14/05/2026

Register to this free event using the link in our description!

Language mattersThe words we use can include or exclude people.At GeneEQUAL, we choose language that is: ✔️ respectful✔️...
07/05/2026

Language matters

The words we use can include or exclude people.
At GeneEQUAL, we choose language that is:
✔️ respectful
✔️ inclusive
✔️ guided by lived experience

Learning and reflecting on language is part of building equity and belonging.

What words help create inclusion in your work or community?

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

Following our first workshop, we came together again to keep the conversation going.This second session built on what we...
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 💙

Join us online at 12 pm!In this webinar, hosted by the UNSW Disability Innovation Institute (DIIU), Iva Strnadová, Eliza...
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!

The My Health Choices My Way webinar is TOMORROW!*Tag 3 people who should join the webinar*Register here: https://tinyur...
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

Address

Centre For Clinical Genetics, The Bright Alliance Building
Sydney, NSW
2052

Telephone

+61293481601

Website

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