GeneEQUAL

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

You are invited to an online meeting. The name of the meeting is "People with Intellectual Disability on boards: Making ...
12/10/2026

You are invited to an online meeting. The name of the meeting is

"People with Intellectual Disability on boards: Making nothing about us without us a reality"

A board is a group of people who make big decisions for an organisation.

This meeting is organised by
✨Centre for Disability Research and Policy
✨Centre for Disability Studies

They will talk about their research into how more people with intellectual disability can be on boards.

Meeting details

✅When? Tuesday 20 October 2026

✅Time: 4:00 pm to 5:00 pm

✅Where?: Online on Zoom (free)

Who will be presenting at the meeting?

- Andrew Radford (The Disability Trust board member and advocate with intellectual disability)

- Mary-Ann O'Donovan (University of Sydney)

- Shane Clifton (University of Sydney and The Disability Trust board member)

How can you join?

Click here to sign up:
https://www.eventbrite.com.au/e/cdrpcds-disability-studies-seminar-intellectual-disability-on-boards-tickets-2002491927260 "Reserve a spot"

They will email you the Zoom link before the meeting starts.

If you have any questions, please email: mailto:[email protected]

Episode 1, Part 3 is out now! ✨In the final part of our conversation with Stacey Touma from Belongside Families, Stacey ...
07/10/2026

Episode 1, Part 3 is out now! ✨

In the final part of our conversation with Stacey Touma from Belongside Families, Stacey and Dr Emma Palmer talk about living a good life.

They talk about:

🔸 What is important to each person
🔸 Listening to hopes and dreams
🔸 Celebrating strengths and interests
🔸 Working together with health professionals
🔸 Helping young people speak up
🔸 Supporting families when things feel hard

Stacey reminds us:

“It's a marathon and not a sprint. And as families, it's okay to take a break.”

🎧 Listen now:

▶️ Buzzsprout:
https://www.buzzsprout.com/2556578/episodes/19310822-episode-1-diagnosis-to-discovery-part-3-living-a-good-life

▶️ Spotify:
https://open.spotify.com/episode/4QPGDF3POuFD0wQRi9g7dg?si=b267e892f1a04087

▶️ Apple Podcasts:
https://podcasts.apple.com/us/podcast/episode-1-diagnosis-to-discovery-part-3-living-a-good-life/id6810027200?i=1000793594074

This is the final part of our conversation with Stacey about diagnosis, support, connection and living a good life.

Missed our webinar? You can now watch the recording! 🎥We had some wonderful conversations about lived experience, co-des...
30/09/2026

Missed our webinar? You can now watch the recording! 🎥

We had some wonderful conversations about lived experience, co-design, and making genetic healthcare more accessible and inclusive.

We were joined by four guests who also feature in our new GeneEQUAL podcast series:

✨ Stacey Touma on finding connection, community, and support after a diagnosis.

✨ Emma Bonser on the power of peer support and helping families navigate rare and genetic conditions.

✨ Rachel Callander on focusing on strengths, possibilities, and flourishing.

✨ Fiona Lawton on communication, self-advocacy, and ensuring every person has a voice.

We also launched new GeneEQUAL resources, including: ✅ Life with Intellectual Disability ✅ Social stories ✅ Our new podcast series ✅ Tools to support more accessible genetic healthcare

🎥 Watch the recording: https://geneequal.com/genetic-resources/webinar-made-together-stronger-together/

Episode 1, Part 2 out NOW!!✨🎧 Listen to Part 2 here:▶️ Buzzsprout: https://www.buzzsprout.com/2556578/episodes/19680426▶...
23/09/2026

Episode 1, Part 2 out NOW!!✨

🎧 Listen to Part 2 here:

▶️ Buzzsprout:
https://www.buzzsprout.com/2556578/episodes/19680426

▶️ Spotify:
https://open.spotify.com/episode/14SQwbnBPTvpgWhfuvfLjI?si=7d1c0f4e81bb45c1

▶️ Apple Podcasts:
https://podcasts.apple.com/us/podcast/growing-stronger-together-people-with-intellectual/id6810027200

In Part 2, Stacey and Dr Emma Palmer talk about what changes when families stop feeling like passengers and start becoming partners. Also, the importance of listening to the voices of those who have walked the path before us.

Siblings of students with intellectual disability, we need to hear from you!Are you interested in working together to de...
21/09/2026

Siblings of students with intellectual disability, we need to hear from you!

Are you interested in working together to develop better genetic health care? If so, get in contact 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 by an Australian state and/or territory

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

Contact Kaitlyn Delaney to inquire:
📧[email protected]
☎ 0411877430

We went to the Australian Association Special Education in Darwin conference to share our GeneEQUAL work.We asked 54 peo...
14/09/2026

We went to the Australian Association Special Education in Darwin conference to share our GeneEQUAL work.

We asked 54 people about learning about health and genetics at school. We talked to students, families, teachers and school leaders.

Here is what they told us:

*Everyone said this is important. People with intellectual disability want to learn about their own health.

*But most schools are not teaching it. And no one is sure whose job it is to teach it.

*Many people said the same thing. They wished they had learned about this at school.

*Teachers want to teach it. They need more training, time and help.

*The best way to teach it is to make it together with people with intellectual disability.

Thank you to everyone who shared their story. And thank you to our team.

You can find our resources on our website
https://geneequal.com/geneequal/what-we-do/national-project/

✨ New podcast episode out now! ✨"I was handed a piece of paper telling me what was not possible… so I threw it away."In ...
14/09/2026

✨ New podcast episode out now! ✨

"I was handed a piece of paper telling me what was not possible… so I threw it away."

In Episode 1 of Growing Stronger Together, Stacey Touma shares the story of her son Alex. Alex has Williams syndrome. When she received the diagnosis, she refused to let old, deficit-focused information limit him.

In this conversation, Emma and Stacey talk about
💛 From "fixing" to flourishing
💛 Why the words at diagnosis matter for life
💛 The power of strengths-based, honest information

Listen now on Spotify, Apple Podcasts & Buzzsprout. You can look for "GeneEQUAL".

This Thursday: a free webinar you do not want to miss!We made three new things. We made them together with people with i...
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. 💙

Are you an Aboriginal or Torres Strait Islander artist?GeneEQUAL would like to pay you to make art!We make booklets and ...
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!

Researchers at the University of New South Wales are interested in the experiences of adolescent siblings of people with...
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]

Address

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

Telephone

+61293481601

Website

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