GeneEQUAL

14/02/2026

💙 15 February — International Angelman Day 💙

Tonight, landmarks across Australia will light up blue to honour the incredible Angelman community and to raise awareness for this rare neurogenetic condition.

● Sydney: Art Gallery of NSW and Barangaroo Towers
● Canberra: National Museum of Australian Democracy (Old Parliament House), the National Carillon, and the National Museum of Australia
● Melbourne: AAMI Park, Rod Laver Arena, Margaret Court Arena.

Angelman syndrome is often diagnosed late, but early identification can change everything, giving families answers, support, and access to therapies when they matter most.

🌟 Today we celebrate the strength, resilience and joy of people living with Angelman syndrome.
🌟 And we stand with families advocating for earlier diagnosis and better support.

Wear blue, share this message, and help us spread awareness. 💙

12/02/2026

Do people use the internet to learn about their health?

Yes! Many people use the internet to find health information — including people with intellectual disability and their families.
A new study looked at more than 1000 free online health resources made for people with intellectual disability and their supporters. The review shows what information is out there, how easy it is to understand, and what is still missing.

Why is this important?

Health literacy means being able to:
✔️ Find health information
✔️ Understand it
✔️ Work out if it is good information
✔️ Use it to make decisions
Having good health literacy helps people understand their health and get the care they need.

What did the study find?

• Many resources are about tests, checks, physical health and mental health
• There are not many resources about sexual health, men’s health, or mental health for children and teens
• Most websites help people find and understand information, but not many help people use the information
• Most resources were made by non‑government organisations, especially from the UK

🔗 Read the study here: https://onlinelibrary.wiley.com/doi/10.1111/jir.70028

10/02/2026

GeneEQUAL people - meet the team!
Part 1: Dr. Emma Palmer

Emma co‑leads GeneEQUAL, a project working to make genomic testing and counselling more accessible and inclusive for people with intellectual disability. She’s passionate about ensuring people with lived experience help shape how genomic healthcare is delivered.

Alongside this work, Emma is an Associate Clinical Professor and Clinical Geneticist at Sydney Children’s Hospital. Her research is driven by what she sees every day supporting families with rare genetic conditions.

Her goal is simple but powerful: to improve the journey for the millions of people living with rare disease, always keeping patient and family voices at the centre.

08/02/2026

GeneEQUAL National Project Update

We’re excited to share an update on the GeneEQUAL National project, a five‑year initiative working to make genomic healthcare fairer and more inclusive for people with intellectual disability.

Many people with intellectual disability have shared that they often feel unsafe, unheard, or left out of decisions about their healthcare. GeneEQUAL is working to change this.

Since 2023, the team has been working with:
- People with intellectual disability (including Aboriginal and Torres Strait Islander communities)
- Families and support people
- Healthcare workers

Together, they’re co‑designing:
- A national plan for respectful genomic care
- Easy‑to‑understand resources
- Guidance to support autonomy and informed choice

With support from researchers, clinicians, disability advocates, community partners, and the NHMRC, GeneEQUAL National is helping build a future where genomic healthcare is truly inclusive and person‑centred.

05/02/2026

Online Event: Two years on from the Disability Royal Commission – People with Disability Australia

People with Disability Australia (PWDA) is holding an online event to talk about what’s happened two years after the Disability Royal Commission’s Final Report.

When: Tomorrow, 6 February 2026

Time: 12:00 pm – 2:30 pm Australian time

How? Online (everyone can join!)

This forum is a chance to:

• Hear from people with disability

• Talk about what’s improved — and what still needs to change

• Learn how the disability community is pushing for rights, inclusion, and safety

• Connect with others who care about creating a fairer Australia

People with disability Australia (PWDA) is run by and for people with disability, and this event is a safe and inclusive space for open conversation.

👉 Find out more and register: https://pwd.org.au/events/

17/08/2025

🏆✨ WE WON! People's Choice Award winners at the CPIR Awards!
So grateful to our incredible partners who make inclusive research possible 💙
Thank you to everyone with intellectual disability and the amazing organisations who've supported this journey:

Advocacy Sydney
for Intellectual Disability
Topics Queensland
Victoria

Julie said it perfectly: "This award shows that when researchers really listen to people with intellectual disability and work together, we can make health care better."

The future of research is inclusive, and we couldn't be more excited! 🚀

22/04/2025

Have you heard about the evaluation of our Toolkit to help improve healthcare for people with intellectual disability? Read about the GeneEQUAL successful model here:

Targeted clinician education is making genetic care more inclusive, says a new study.

09/03/2025

Exciting accessibility update! 🎉 Our team member Bronwyn recently visited the recording studio to create professional voice overs for our GeneEQUAL website. We're committed to making our inclusive, person-centered, and respectful work accessible for everyone - one recording at a time.

05/03/2025

📢 NEW STUDY ALERT 📢 We're seeking siblings of young people with intellectual disability to participate in research about their brother or sister's experiences with health and genetics during high school.

Your perspective matters and will help improve health and healthcare for people with intellectual disability. See the image for complete details about this important study.

Please share with anyone who might be interested in contributing to this research.

28/02/2025

Proud of our team member Emma representing GeneEQUAL on International Rare Disease Day 2025! She presented our inclusive research that directly involves people with intellectual disability to improve genetic and healthcare. Making healthcare equitable, one collaboration at a time!

25/02/2025

📣 RESEARCH PARTICIPANTS NEEDED 📣

We are speaking with parents & carers of young people with intellectual disability about their child's experiences of & in high school.

Your insights can help improve education and healthcare!

Visit our website for more information about this important study and how to participate:

https://geneequal.com/stories/parent-carer-of-a-student-or-young-person-with-intellectual-disability/

This project is about improving the education students with intellectual disability learn about genetic health care in schools.

21/08/2024

GeneEQUAL attended & shared their recent studies about health & genetic education for students with intellectual disabilities from teachers’ & students’ experiences & perspectives.