🔥 Hot off the press: our first paper of 2024! Genetics in Medicine Ilias Goranitis Dylan Mordaunt Economics of Genomics and Precision Medicine Unit How much do exomes and genomes actually cost?🧬💱 A super detailed micro costing study from us: labour costs much higher than previously reported 👩‍🔬🇦🇺👇 gimjournal.org/article/S1098-…

Did you know that the majority of rare genetic diseases begin in childhood? These conditions can have a profound impact on a child’s life.🧬 This Rare Disease Day, let's raise collectively raise awareness and advocate! #RareDiseaseDay #ShareYourColours

So excited to see this paper that Dr Fiona Lynch, PhD MGenCouns and I led on #genomic #newborn #screening in print! Huge thanks to the entire team for their work on this massive project. UniMelb MDHS University of Melbourne Murdoch Children's Research Institute (MCRI) Biomedical Ethics Research Group Centre for Biomedical Ethics and Law - KU Leuven

Rare Disease Day is 1 month away! 📣 Join the movement: #LightUpForRare and #ShareYourColours! Download our materials available in multiple languages to maximise our global impact: rarediseaseday.org/downloads/ Quote tweet this and tell us what you're doing for Rare Disease Day!

I think the behavioural challenges are the of some of the most difficult symptoms to deal with when you care for someone with #FOXP1 Syndrome. Sometimes our kids push us to the limits. #Rare #RareDiseaseDay

.⁦SWAN Australia⁩ supports families who are caring for a child with an #undiagnosed or #raredisease by offering them support, information, connection and advocacy. #rarediseaseday abc.net.au/news/2024-02-2…

The review of accessibility standards for public transport was long overdue. Let’s hope the standards are implemented quickly. abc.net.au/news/2024-03-2…

Well said #ProfAngelaMorgan. Plain English summaries of research papers are important so parents can understand what targeted therapies to try with their children. Without a diagnosis it is harder to engage in the most targeted speech therapy. GETA

📢 The Healthy Trajectories team is excited to offer a tailored Family Engagement in Research (FER) course for Australian researchers and family engagement partners, beginning in July 2024! 👉 Learn more about the FER course on our website: healthy-trajectories.com.au/news-and-event…

MinterEllison advises on commercialisation of Genomical - Media release - MinterEllison minterellison.com/articles/minte…

Have you ever wondered about how consumers and researchers can work better together but don't know where to start? If the answer is "yes", then this Family Engagement in Research Course is for you. Please visit the Healthy Trajectories website bit.ly/3xZZyeQ to apply. #FER

Did you know that the #FER course early bird registrations have been extended until 19/5/24? So, what are you waiting for? To learn more about how family engagement partners (consumers) and researchers can work better together, please register here: bit.ly/3xZZyeQ

Are you interested in establishing good practices for reanalysing & recontacting patients regarding their genomic data? If so then register bit.ly/4a6F15G for the Collaborative for Better Health & Regulation forum on ‘Reanalysis & Recontact: Establishing Good Practice’

#INSAR2024 kicks off TODAY in Melbourne, Australia at the Melbourne Convention Exhibition Centre. Follow and use #INSAR2024 to hear updates on the cutting-edge research being presented this week!

The application deadline for the 2024 Family Engagement in Research course is rapidly approaching! Applications close at 5.00PM on 12 June 2024 (AEST) so please complete the FER application form before the deadline: redcap.mcri.edu.au/surveys/?s=DMY…

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New publication alert 🔽 Global action to improve equity of action to a diagnosis Clinicians + researchers reach out if you are keen to join our international diagnostic brains trust doi.org/10.1038/s41525… Wilhelm Foundation Udninternational Australian Genomics Rare Voices Australia SWAN Australia Genetic Alliance AU

Concerns raised at our forum highlight the risks of automated assessments in the NDIS process. Personalised support is essential—not formulaic decisions. Let's advocate for fair assessments that truly reflect individual needs: everyaustraliancounts.com.au #NDISBill #DisabilityRights

Last chance to have your say on the NDIS Bill! Submissions open until 12 July. Make your voice heard on key issues like co-design, support limits, and appeal rights. Email [email protected] or use the online portal: aph.gov.au/Parliamentary_… #NDIS #NDISBill

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