GeneEQUAL Team webinar on co-production

Our GeneEQUAL Team was invited to speak at UNSW Disability Innovation Institute about our research.

In our webinar, we spoke about how we used co-production to make an educational toolkit for health care professions.

We discussed how co-production enabled a more inclusive, person centred and respectful model of genetic health care with people with intellectual disability.

New study for teens and young people with intellectual disability

We want to speak to teens and young people with intellectual disability.

We want to know about what you want to learn about

  • genetics
  • health care
  • health care choices

Many people with intellectual disability have told us

Members from the GeneEQUAL team are doing a study about what teens and young adults (up to 28 years of age) with intellectual disability across Australia want to learn about their health and making informed health care choices.

This is because everything we do at GeneEQUAL centres on what matters most to people with intellectual disability, including young people. Please check out details about our study in the flyer below, contact Jennifer if you want to learn more or know a young person keen to join the study, and share this news with your friends and colleagues.

Download the flyer below.

PDF file, 920 KB

Cover of the Empowering students with intellectual disability flyer

Australian Genomics Education Network Australasia meeting

Emma presented on how co-production is so important in making educational resources about genomics and teaching health care workers.

The meeting was at the Melbourne Convention and Exhibition Centre.

Emma at a lectern in front of an audience

GeneEQUAL invited to speak at the Australian Genomics Summit

Skie, Iva and Emma talked about how we made the GeneEQUAL Educational Toolkit to an international audience of health and genetics experts.

The summit was held at the Melbourne Convention and Exhibition Centre in July.

We were also featured in the post-conference newsletter from Australian Genomics.

Emma, Iva and Skie on stage presenting at the summit

European Society of Human Genetics

The GeneEQUAL team was invited to talk at the European Human Genetics Conference in Glasgow, Scotland from June 10 to 13.

We spoke about the importance of language in genetics and why co-production is so important in genetics education.

A panel of four people talking at the European Human Genetics conference

Human Genetics Society of Australasia Conference

The GeneEQUAL team presented at the national Human Genetics Society of Australasia Conference in November 2022. Skie, Jackie, Iva and Emma were so happy that many health professionals came and spoke to them after the presentation. These health professionals let them know how surprised they were to hear that people with intellectual disability had been treated unfairly and had been excluded. They said they were on board to learn together how we can make genomic health care more inclusive, accessible and respectful! 

Genetic Alliance Australia 2022 Forum

The GeneEQUAL team was honoured to speak at the Genetic Alliance Australia 2022 Forum at the NSW Parliament on September 20th. Genetic Alliance Australia‘s mission is to improve support for people who are impacted by genetic conditions.

NSW Health Minister Hon Brad Hazzard launched the event. After that, the Parliamentary Secretary to the NSW Premier, Gabrielle Upton MP FAICD, gave a speech.

We were very happy to speak to many different people: academics, members of parliament, health professionals, advocacy leaders, and people living with and supporting those with genetic conditions.

The title of the forum was “Genetics: Conversations, Insights and Changed Practice”. This was in keeping with the goals of the GeneEQUAL team.

Professor Iva Strnadová and Dr Emma Palmer were especially proud to co-present with Ms Skie Sarfaraz from Self-Advocacy Sydney. Skie’s lived experience of having intellectual disability helped explain to the audience the value of GeneEQUAL’s research. Skie helped the audience to understand why inclusive research, co-led with people with intellectual disability, is so important.

Four women hold up a document to the camera
Sierra Willow, Skie Sarfaraz, Jackie Boyle and Iva Strnadová at the Genetic Alliance Australia 2022 Forum

Neurodevelopmental and Behavioural Society of Australasia Conference

The GeneEQUAL team co-presented at the Neurodevelopmental and Behavioural Society of Australasia Conference in August 2022.

Four members of the GeneEQUAL team pose in the foyer
Julie Loblinzk, Iva Strnadová, Yvette Valla and Emma Palmer at the Neurodevelopmental and Behavioural Society of Australasia Conference
Three women from gene equal present at a table in front of a screen
Julie Loblinzk, Iva Strnadová and Emma Palmer share a joke while presenting at the Neurodevelopmental and Behavioural Society of Australasia Conference
Three women from gene equal present at a table in front of a screen
Julie Loblinzk presenting at the Neurodevelopmental and Behavioural Society of Australasia Conference

European Society of Human Genetics Conference

The GeneEQUAL team talked about what they have learnt from the study at the European Society of Human Genetics Conference in June 2022 in Vienna. 

Emma Palmer speaking at a lectern in front of a large screen.
Emma Palmer speaks at the conference in Vienna