SWAN Australia
@swanaus
SWAN Australia provides information and support to families caring for a child with an undiagnosed or rare genetic condition.
ID:1427778343
http://www.swanaus.org.au 14-05-2013 12:54:39
3,4K Tweets
1,3K Followers
2,3K Following
🌈 Sleep Survey Alert! 🌙💤
UQ, RCH, MCRI, Westmead are conducting groundbreaking research on sleep problems in children with Neurodevelopmental Disorders (ND)🌙💤
Fill out the survey: bit.ly/3u6QbIV
#SWANSleepSurvey #ResearchFriends #JoinTheStudy #voluntary
It’s the GETA 🧬🧠 conference 2024 - which not solely a hub for groundbreaking scientific presentations (re genetic epilepsies) but also a vital support network for families!
Featuring Prof Ingrid Scheffer -
Chair of Paediatric Neurology at University of Melbourne & Senior Principal Research
Calling all KAT6B families! Murdoch Children's Research Institute (MCRI) is hosting a study on speech and language development in folks with KAT6B gene variants.
If you or a loved one has a gene change in KAT6B and would like to participate, please reach out via email to [email protected]. Miya St John
Don't miss out on @MarcFiume’s #DNAdialogue presentation “The future is federated: accelerating collaborative research with standards compliant federated networks”.
This Thurs 28 Mar at 9am (AEDT).
Register here: tinyurl.com/bdhzmadz
DNAstack #genomics #seminarseries
“The future is federated: accelerating collaborative research with standards compliant federated networks”: Join Australian Genomics for #DNAdialogue on Thu 28 March, 9am (AEDT).
Don't miss this opportunity to hear from Marc Fiume, DNAstack (Canada).
Register: tinyurl.com/mr26r85j
A new study by our team, in collaboration with Australian Genomics, highlights priority indicators for assessing the value of genomic testing in rare diseases, a much-needed effort to standardise evidence generation.
Read more here: pubmed.ncbi.nlm.nih.gov/38459833/
#Genomics #RareDiseases
The future is federated: accelerating collaborative research with standards compliant federated networks”: Join Australian Genomics for #DNAdialogue on Thu 28 March, 9am (AEDT).
Don't miss this opportunity to hear from Marc Fiume, DNAstack (Canada).
Register: tinyurl.com/mr26r85j
🌟 Fact Friday Alert! 🌟
Did you know it takes an average of 4.8 years to receive a correct diagnosis.
#FactFriday #SWANC #Undiagnosed #RareConditions 🧬🔍
🌈 Sleep Survey Alert! 🌙💤
UQ, RCH, MCRI, Westmead are conducting groundbreaking research on sleep problems in children with Neurodevelopmental Disorders (ND)🌙💤
Fill out the survey: bit.ly/3u6QbIV
#SWANSleepSurvey #ResearchFriends #JoinTheStudy #voluntary
Be a part of the awareness journey for Mitochondrial disease with Mito Foundation
Engage with our fact today and delve deeper into their work: mito.org.au
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#RareDiseaseDay 2024 #LightUpForRare #ShareYourColours #RareDiseaseDay #geneticallianceaustralia #raredisease
New podcast ep from George Taleporos featuring Helen Dickinson & Anne Kavanagh BMBS PhD FAFPHM FASSA FAHMS
🤗 Absolutely thrilled to see our #AcuteCare Australian Genomics work featured nature together with ExeterGenomes Rady Genomics euan ashley 🧬⏱️🤗 nature.com/articles/d4158…
🌈 Sleep Survey Alert! 🌙💤
UQ, RCH, MCRI, Westmead are conducting groundbreaking research on sleep problems in children with Neurodevelopmental Disorders (ND)🌙💤
Fill out the survey: bit.ly/3u6QbIV
#SWANSleepSurvey #ResearchFriends #JoinTheStudy #voluntary