GeneEQUAL

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

07/09/2026

This Thursday: a free webinar you do not want to miss!

We made three new things. We made them together with people with intellectual disability, their families and support people. Now we want to celebrate with you.

Here's what we are launching:

1️⃣ A new podcast: "Growing Stronger Together"

2️⃣ The world's first Easy Read booklet about intellectual disability.

3️⃣ Social stories to help young people get ready for a genetic appointment.

You will hear from our GeneEQUAL team: Iva Strnadová, Julie Loblinzk Refalo OAM, Skie Sarfaraz and Emma Palmer. Plus podcast guests Emma Bonser, Stacey Touma, Fiona Lawton and Rachel Callander.

The webinar is free. Everyone is welcome.

🗓️ This Thursday, 10 September, 12pm
🔗 Register here: 3c06dcd4-684f-4092-8cd7-7397f4a7bb95@3ff6cfa4-e715-48db-b8e1-0867b9f9fba3" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/3c06dcd4-684f-4092-8cd7-7397f4a7bb95@3ff6cfa4-e715-48db-b8e1-0867b9f9fba3

Come celebrate with us — and please share with your friends. 💙

24/08/2026

Are you an Aboriginal or Torres Strait Islander artist?

GeneEQUAL would like to pay you to make art!

We make booklets and videos about genetic health care. We make them together with people with intellectual disability. We would love your original artwork for these resources.

Aboriginal and Torres Strait Islander artists are welcome including:

- Artists with intellectual disability
- New artists and experienced artists
- You do not need to have shown your art before

You can make art about:

- Life with intellectual disability
- Family, kinship and belonging
- Friendship and community
- Strength, identity and culture

What you get:

- You get paid for your work
- You keep your copyright

We will use your art in our booklets, videos and website. We will not sell it.

How to take part:
1. Fill in our Expression of Interest (EOI) form
2. Send us a few photos of art you are proud of.
3, Add a short note, voice message or video about yourself. Someone you trust can help you, or send it for you.

The form is on our website
https://geneequal.com/stories/expression-of-interest/

You can also email us and we will send you one.

Expressions of interest close 15 November 2026.

Email: [email protected]
Website: www.geneequal.com.au

Tag or share with someone who might like to take part!

16/08/2026

Researchers at the University of New South Wales are interested in the experiences of adolescent siblings of people with long-term health conditions, including intellectual disability.

What is involved?

A simple online survey that should take around 10 minutes to complete. The survey questions ask about where siblings go for information and support, including using social media and AI tools (like ChatGPT).

Siblings are eligible to complete the survey if they are:

· Between 12 and 18 years old

· Living in Australia

· Currently the sibling of someone who has been living with a long-term illness, disability, or health condition

· Able to access a device (mobile phone, iPad, laptop) with Internet access

Contact

If you or your child is ready to take the survey, they can do so here: https://unsw.au1.qualtrics.com/jfe/form/SV_cSErpUbE0BSGBj8

For questions, please contact Maddison Smith at [email protected]

13/08/2026

VALID is an organisation dedicated to advocating for the rights of people with intellectual disability.

They recently published Tony Lang's legal advice confirming that people with intellectual disability can make excellent Board members.

The advice it's a must-read for any organisation committed to true inclusion.

When we provide the right support and accessibility, we honour the crucial principle of "nothing about us without us."

We are sharing the Easy Read version. This was created by VALID. We extracted it from their website.

Read the full advice on VALID's website: https://valid.org.au/legal-advice-about-people-with-intellectual-disability-on-boards/

26/07/2026

IMPORTANT
Today Monday 27 of July at around 2pm
- your phone
- smart watch
- or tablet
will vibrate and make a noise.

You do not need to do anything or reply to the alert.

What exactly will happen?

Your device will make a loud noise that sounds like a siren and vibrate at the same time.

The sound will play for about 10 seconds.

The sound will play even if your phone is on silent or 'do not disturb'.

The loud noise might also play through hearing aids, cochlear implants, or speakers if they are connected to your device via Bluetooth.

The alert may also work with screen readers, text-to-speech, braille devices, or bed shakers.

Why is this happening?
The Australian Government is testing the new AusAlert warning system to make sure it works properly.

This system will be used in the future to send urgent safety warnings to people across Australia during emergencies like floods or fires.

23/07/2026

GeneEQUAL People - Meet the team!
Part 8: Bronwyn Terrill

Bronwyn Terrill is a science communicator, educator, and researcher dedicated to making genomics more accessible and inclusive. In her role at the Centre for Population Genomics and through her work with initiatives like GeneEQUAL, she focuses on creating resources that help individuals and communities better understand and navigate genetic health. A strong advocate for co-production, Bronwyn works directly with underrepresented communities and people with intellectual disabilities to ensure their voices shape the tools and resources designed for them.

Bronwyn brings a truly global perspective to her work, having led public engagement at the Wellcome Trust Sanger Institute in the UK and developed award-winning educational programs in the United States. Her career has involved collaborating with museums, researchers, educators, and communities to design innovative ways of communicating complex science—from exhibitions and interactive media to national and international education initiatives.

Through her work, Bronwyn is committed to ensuring that advances in genomic medicine are not only understood, but are accessible and beneficial to everyone.

15/07/2026

We have big news to share:
The GeneEQUAL protocol paper is published!
It shares our plan to make genetic health care accesible and more welcoming for people with intellectual disability.
People with intellectual disability are co-researchers in every step of the way.
The paper is free for anyone to read and has an Easy Read version.

You can go to our website http://geneequal.com and scroll down to "What's new at GeneEQUAL".

14/07/2026

Are you living with a rare disease, or caring for someone who is?

Researchers at UNSW, in collaboration with Rare Diseases NSW, are developing health literacy toolkits to help people living with rare diseases, their families/carers, and health professionals to find, understand, and use health information.

We’re inviting you to take part in a short survey to help guide toolkit design.

Your input will help ensure the tools are practical, relevant, and genuinely useful for the rare disease community.

💬 Please help Rare Diseases NSW!

🩺 What’s involved?
✔️ Read the participant information and provide consent
✔️ Complete a short online survey (approx. 10–15 minutes)

✅ Who can take part?
• People living with a rare disease or their families/carers
• Aged 18 years or over
• Currently living in Australia.

🔗 To participate:
👉 Click here
https://unsw.au1.qualtrics.com/jfe/form/SV_b2RBvnxKxYLS3HM

📧 Questions? Contact: [email protected]

Please share this post with others who may be interested. Your insights will directly shape tools designed to support the rare disease community.

09/07/2026

GeneEQUAL People - Meet the team!
Part 7: Dr Caroline Basckin

Dr Caroline Basckin is an educator and researcher whose work centres on inclusion, equity, and meaningful change for people with disability. At UNSW Sydney, she contributes to projects such as GeneEQUAL, which aim to break down barriers in health and education by developing accessible, evidence-based resources in partnership with the communities they are designed to support.

Caroline’s work is deeply informed by her experience as a learning enrichment teacher, where she supports primary school students with additional needs in mainstream classrooms. This hands-on role gives her a unique perspective, ensuring that her research remains practical, grounded, and responsive to real-world challenges faced by teachers and learners.

Through both her research and teaching, Caroline is committed to ensuring that inclusive practices are not only understood, but effectively implemented—helping to create systems where all individuals have the opportunity to thrive.

02/07/2026

Are you the sibling of a student with intellectual disability? We want to hear from you!

Are you interested in working together to develop a better model of inclusive, person-centred and respectful genetic health care? If so, get in contact with the GeneEQUAL team to organise a 30-to-60 minute interview to share your ideas and stories.

This study is for young people:
- with a sibling with intellectual disability
- aged 13-29
- who have attended or are currently attending high school in Australia for at least one full school year
- who are engaging or have engaged with a curriculum utilised by an Australian state and/or territory

Interviews can be:
- in person
- on the phone
- via video conference

Contact Kaitlyn Delaney to inquire:
Email: [email protected]
Phone: 0411877430

Address

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

Telephone

+61293481601

Website

http://www.geneequal.com/

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