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
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https://www.geneequal.com/ 19-01-2023 07:16:00
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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…
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 There's still time to register for RACP Congress
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 UNSWMedicine
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
This is a very special story for me this #RareDiseaseDay2024 and speaks to the importance of listening to people living with a rare disease as we highlight here rarevoices.org.au/national-recom… Finn’s mum is the expert in Finn- we just help facilitate access to diagnosis and care
The power of diversity! sciencedirect.com/science/articl…
New editorial celebrating global rare achievements on #RareDiseaseDay2024 Huge congratulations to Wendy in leading a great new journal with the voice of those living with rare diseases at its core. Rare Voices Australia RDI
Have you read our #coproduced Easy Read #health booklets? Join the 1000 visitors from 49 countries to learn more about #genetic #health care 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)
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!
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
🚨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
🚨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)
We want to hear from family members or support people of children or adults with intellectual disability. We want to work together to develop a better model of #inclusive #personcentred #respectful #genetic healthcare for people with intellectual disability RACGP NSW Health
We are talking with teenagers & young people (up to 28yo) with intellectual disability about what they learnt at high school about #health #health carechoices & #genetics See our website to contact us if you are interested in this important study geneequal.com/current-news/g… Royal Australasian College of Physicians
Want to know more about the GeneEQUAL Toolkit? Want to hear what people with intellectual disability & #healthcare workers think about it? Read our #easyread final report about what people say GeneEQUAL should work on next! geneequal.com/genetic-resour… (Elizabeth) Emma Palmer (she / her) Iva Strnadova
🎊 Happy New Year from GeneEQUAL! Our vision is that all people with intellectual disability experience #respectful #personcentred #inclusive #genetic #healthcare . Visit our website geneequal.com to find out more about who we are & what we do! NSW Health RACGP SWAN Australia
Are you a family member or support person of a child or adult with intellectual disability? We want to hear from you & work together to develop a better model of #inclusive #personcentred #respectful genetic #healthcare for people with intellectual disability! NSW Health RACGP
Happy holidays from GeneEQUAL We would like to extend our warmest wishes to you for a joyous festive season! Thank you for being part of our journey in improving #healthcare for people with intellectual disability. We cannot wait for next year’s adventures! There's still time to register for RACP Congress NSW Health