GeneEQUAL
@geneequal
An inclusive team working to ensure that the opinions, preferences & lived experiences of all people with intellectual disability are heard and responded to
ID: 1615971288895623168
https://www.geneequal.com/ 19-01-2023 07:16:00
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🚨New paper alert! Grateful to Frontiers & our #coresearchers for supporting our publication highlighting that people with intellectual disability can teach & work together with #healthcare workers to do good #healthcare. Find out more: geneequal.com/genetic-resour… Self Advocacy Sydney Inc (SAS)
🚨Editorial alert! We are honored to be mentioned by Ding et al. BMJ Quality & Safety who support our article about improving informed consent in #healthcare for people with intellectual disability. Read about it here: geneequal.com/current-news/i… Self Advocacy Sydney Inc (SAS) IDRS Inc. Australian Genomics
insightplus.mja.com.au/2024/7/time-to… On the eve of #RareDiseaseDay2024 delighted to be heading to Australian parliament for the launch of our first-ever National Recommendations for Rare Disease Health Care … can’t wait to share with you all tomorrow Rare Voices Australia UNSW Medicine & Health Sydney Children's Hospitals Network
Already #RareDiseaseDay2024 in Aus & so pleased to share with you our first-ever National Recommendations for Rare Disease Care rarevoices.org.au/national-recom… Huge thanks to the RArEST team, Rare Voices Australia ,our clinical working group and people living with rare who codesigned these!
Have you read our #coproduced Easy Read #health booklets? Join the 1000 visitors from 49 countries to learn more about #genetic #healthcare for people with intellectual disability. Click here now! geneequal.com/genetic-resour… RACGP NSW Health Self Advocacy Sydney Inc (SAS) SWAN Australia Australasian Society of Genetic Counsellors (ASGC)
People with intellectual disability are not always included in research about them or able to access academic research. Here is the #EasyRead version about Equal Right to Decide: cid.org.au/resource/equal… CID Self Advocacy Sydney Inc (SAS) Iva Strnadova (Elizabeth) Emma Palmer (she / her) Australian Genomics
GeneEQUAL presented at the Future Health Expo at UNSW This event showcased the UNSW research revolutionising #healthcare & medical science. Find out more here: innovationcommunity.unsw.edu.au/futures-expo-s… (Elizabeth) Emma Palmer (she / her) Iva Strnadova RACGP NSW Health UNSW Disability Innovation Institute UNSW Medicine & Health
We are talking with parents & carers of young people with intellectual disability about their child’s experiences of #health & #genetics at high school. See our website for more information about this important study: geneequal.com/current-news/n… Self Advocacy Sydney Inc (SAS) Australian Genomics The Royal Australasian College of Physicians
What an honour to present the GeneEQUAL Toolkit to healthcare workers in Queensland, together with Julie Loblinzk OAM, Emma Palmer and Jackie Boyle. Thank you to the Queensland Australia Ministry of Health for making this happen! To access GeneEQUAL Toolkit: genetics.edu.au/SitePages/Inte…
Have you visited our website, seen our #EasyRead resources or watched our Best Practice videos? Join the rest of the 🌍 checking out our #Toolkit for health care professionals: geneequal.com/genetic-resour… Australasian Society of Genetic Counsellors (ASGC) The Royal Australasian College of Physicians NSW Health Centre for Genetics Education, HETI NSW Health NHMRC Australian Genomics
🚨Paper alert! We are honoured that our research article in BMJ Quality & Safety about improving informed healthcare consent for people with intellectual disability was named number 2 in the Top 10 articles list of 2023. Read about it here: blogs.bmj.com/qualitysafety/… Self Advocacy Sydney Inc (SAS)
GeneEQUAL attended #HGSA2024 & shared their recent studies about health & genetic education for students with intellectual disabilities from teachers’ & students’ experiences & perspectives Human Genetics Society of Australasia (Elizabeth) Emma Palmer (she / her) Iva Strnadova Bronwyn Terrill Karen-Maia Jackaman
Want to know more about what the Royal Disability Commission said about preventative healthcare for people with intellectual disability? Click here: 3dn.unsw.edu.au/news/disabilit… (Elizabeth) Emma Palmer (she / her) Iva Strnadova Australasian Society of Genetic Counsellors (ASGC) Australian Genomics Jackie Leach Scully Bronwyn Terrill