Many people with intellectual disability have told us they wish they were taught about genetics and health care choices in schools. View our research article.
Members from the GeneEQUAL team are doing a study about what students 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.
PDF file, 920 KB
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.
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.
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.
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.
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.
Julie Loblinzk, Iva Strnadová, Yvette Valla and Emma Palmer at the Neurodevelopmental and Behavioural Society of Australasia ConferenceJulie Loblinzk, Iva Strnadová and Emma Palmer share a joke while presenting at the Neurodevelopmental and Behavioural Society of Australasia ConferenceJulie 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.
