Parent/carer of a student or young person with intellectual disability

Are you a parent/carer of a student or a young adult with intellectual disability living in Australia?

We want to know:

  • What are your thoughts on providing genetics and health education to your child?
  • What kinds of support in learning about genetic content do you find most helpful for your child?

If you are interested please contact

Chia Roung Chen

0424 357 5510424

chia-roung.chen@unsw.edu.au

Jennifer Hansen

0400 370 392

jennifer.hansen@unsw.edu.au

PDF file

New study for health care professionals

We want to talk to health care professionals (including medical students) who have worked with people with intellectual disability.

We want to talk to them about

  • their experiences delivering health care to people with intellectual disability
  • their experiences talking about genes and genetic testing with people with intellectual disability
  • their experience with delivering genetic health care to people with intellectual disability
  • what resources or changes to health care services could be better
  • what could be better

Please contact Dr Emma Palmer if you would like to take part in this study.

NameDr Elizabeth Emma Palmer
PositionCoordinating Chief investigator, Clinical Lecturer and Clinical Geneticist
Telephone(02) 9348 1601
Emailelizabeth.palmer@unsw.edu.au

To find out more, download the flyer below.

PDF file

December 2023 Newsletter

Please read our latest Newsletter.

We want to tell you about the latest news coming from the GeneEQUAL team

Click here for the Easy Read

PDF file

October 2023 newsletter

Please read our latest Newsletter.

We want to tell you about the latest news coming from the GeneEQUAL team.

PDF file

Newsletter August 2023

Please read our newsletter for August 2023.

We want to tell you about all the great things the GeneEQUAL team is doing.

Download our newsletter below

PDF file

New study for people with intellectual disability

We want to talk to people with intellectual disability.

We want to talk to them about genetic health care

  • what is good
  • what is bad

We want to make genetic health care better for people with intellectual disability.

We would love to hear the experiences of:  

  • people with intellectual disability aged 12 and above  

You can be involved through  

  • an interview which can be face to face, online, or on the phone

The interviews last around 30 minutes to 1 hour. 

If you like you can bring a person you trust with you to the interview.

If you are interested or have any questions, you can contact  

Emma Palmer  

by email: elizabeth.palmer@unsw.edu.au  

by phone 02 9382 5583 

or

Iva Strnadová  

by email: i.strnadova@unsw.edu.au  

by phone: 0426 959 172 

Download the flyer below.

PDF file

New study for health care professionals about GeneEQUAL Toolkit

We want to hear from health care workers.

Tell us what you think about the GeneEQUAL Toolkit.

Our survey (linked to prize draws) is open.

It will close on the 23rd of November 2023.

Scan the QR code for more information

New study with families and support worker recruitment

We want to speak to family members and/or support people of children and adults with intellectual disability?

We want to learn about your experiences with genetic health care and health care with people with intellectual disability.

Together we can develop a better model of inclusive, person-centred and respectful genetic health care for people with intellectual disability.

Download the flyer below.

PDF file

Julie Loblinzk OAM

The GeneEQUAL team are honoured that UNSW Adjunct Lecturer Julie Loblinzk received the Medal of the Order of Australia (OAM) for her services to people with people with disability in Australia.

Julie Loblinzk holds her OAM certification
Iva, Manjekah, Emma and Julie at Julie's OAM award ceremony

New resources available!

The GeneEQUAL team have been busy co-producing Easy Read booklets, best practice communication videos and an educational package for health professionals. These are now live on the Centre for Genetics Education website as well as our website in the resources section. We can’t wait to share them with you.