National Centre of Excellence in Intellectual Disability Health

28/09/2026

Last week, UNSW held Diversity Festival at UNSW.

The Centre ran a stall called 'Words Matter' and encouraged people to take part in activities that showcased the important role inclusion and lived experience expertise plays in our work.

25/09/2026

This Dementia Action Week, we’re encouraging everyone to learn a little more and help make information about dementia accessible to everyone.

Dementia is more common among people with intellectual disability, so accessible information about the signs of dementia, living well and looking after brain health matters.

Use the digital tool kit from Dementia Australia to start your conversation: https://www.dementia.org.au/your-digital-toolkit

24/09/2026

Today is World Cancer Research Day.

The Centre is using this day to call for more accessible cancer screening and targeted prevention for people with intellectual disability.

You can read our research report ‘Cancer Incidence in People with Intellectual Disability and Down Syndrome in Australia’ here: https://nceidh.org.au/news/new-research-showing-higher-cancer-risk-people-intellectual-disability-highlights-urgent-need

23/09/2026

Help us improve heart care for people with intellectual disability.

The Centre’s Heart Journey Project is looking for people with intellectual disability who have Type 2 diabetes to join our steering group.

Steering group members will help guide the project, share their experiences and help make decisions about the work.

Interested in getting involved?

Contact Maryann Barrington using the contact details below.

22/09/2026

Dementia Action Week is a chance to learn, talk and share.

This Dementia Action Week, we’re shining a light on dementia and intellectual disability.

Our team is always working to improve care and support for people with intellectual disability living with dementia.

Down Syndrome Australia has a great Easy Read guide to dementia and brain health.

Take a look and help us spread the word:https://www.downsyndrome.org.au/wp-content/uploads/2026/02/Easy-Read-Dementia-19.02.2026.pdf

22/09/2026

Are you a person with intellectual disability who lives in Australia?

We want to hear from you!

We want to hear about your experiences getting health care.

You can tell us about experiences that were good or experiences that were bad.

Your story can help improve health care for everyone.

Share with us your story here: https://nceidh.org.au/get-involved/share-your-story

17/09/2026

“You need to understand the specific issues that are relevant to this person sitting in front of you who has Prader-Willi syndrome.” Professor Tony Holland

In his presentation at the Centre, Professor Tony Holland explored how the interplay between environment and biology shapes the experiences of people with Prader-Willi syndrome.

You can watch the full presentation using the link in the comments.

16/09/2026

Our newsletters are one of the best ways to stay updated on what's happening at the Centre.
By subscribing to our newsletter you can find out about webinars, new research projects to take part in, resources, job opportunities and what we’re doing to improve health care for people with intellectual disability.

Subscribe now using the link in the comments!

11/09/2026

Are you a healthcare professional, and have you signed up to the next Down Syndrome Medical Interest Group online meeting?

The DSMIG-AUS September meeting will delve into the topic of endocrine conditions in Down Syndrome.

This will be a knowledge-packed session where Associate Professor Esther Briganti, endocrinologist will provide an overview of this topic. Esther has been practising in Melbourne and regional Victoria for over 30 years including work in chronic disease research and academia.

Don't miss this opportunity to expand your understanding and connect with others in the field.

This meeting is for:
- Healthcare professionals (including allied health professionals)

Register now:

Join us for the next meeting of DSMIG-AUS where we will discuss Endocrine conditions in Down Syndrome

10/09/2026

Fragile X syndrome is the leading cause of inherited intellectual disability, affecting about 1 in 4,000 males and about 1 in 6,000 females.

This article unpacks Hayden Eastbury’s experience with Fragile X.

"I think it has helped to deepen people's understanding that everyone with a disability is unique; they all have different strengths, abilities, challenges, and that leads to needing different support needs," Ms Bruce said.

Learn more about Fragile X here: https://www.fragilex.org.au/

And read the full article using this link: https://www.abc.net.au/news/2026-08-30/hayden-eastbury-visits-half-abc-australian-bureaus/107071532