Connections, information, support & advocacy for the Fragile X community - those living with Fragile X syndrome or Fragile X Premutation-Associated Conditions.
Brookvale, Sydney
Joined March 2014
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Kicking off our 2025 webinar series - a discussion on medications and #fragilexsyndrome with Dr Jonathan Cohen. Thurs 20 Feb 8pm AEDT. Live Q&A after the presentation.
Shoutout to @Qantas Side by Side grant program for their support.
#fxwebinarseries
us02web.zoom.us/meeting/regi…
Wrapup on the Fragile X FMR1 Premutation, and the range of symptoms and health conditions some FX carriers experience.
#fxpac #fragilexpremutationassociatedconditions #fxcarriers
youtu.be/TEWNqePEVow
Fragile X Australia retweeted
We have begun a project to improve the health and wellbeing of people with intellectual disability living with dementia. With thanks for a grant from the @DementiaAus Research Foundation and the Bartle Pathway to Care. Find out more at our project page 3dn.unsw.edu.au/projects/und…
@CHeBA_UNSW @DemSupportAu @DownSyndromeAu @FragileXAus
#DementiaFriendlyCommunity #DementiaActionWeek #Dementia
Have a question about #fragilexsyndrome ? Ask an expert this Sunday morning - psychologist/educator Marcia Braden teaming up with Dr Cohen MD for an open mic session. We're co-hosting with our friends at FX NZ :-) #fxwebinarseries
us02web.zoom.us/meeting/regi…
Fragile X Australia retweeted
It’s Doctor Time!
Only 7% of Australians with intellectual disability are visiting a GP for a Medicare-supported yearly health check.
Our new campaign aims to turn that around. Help us spread the word:
inclusionaustralia.org.au/he…
#ItsDoctorTime #IntellectualDisability
Fragile X Australia retweeted
Happy #FathersDay! Whether you're a father of someone with #autism, an #autistic father yourself or are a carer or mentor to someone on the #autismspectrum, we hope today is a special one for you and your family. You can watch the full #DADFilm here: buff.ly/2P5LKrZ
Busy Saturday talking to GPs about their experience in offering reproductive #carrierscreening for patients considering/in early stages of pregnancy. Knowledge gaps indicate a need for info resources/CPE for GPs. Shoutout to Mary & @TeamVCGS for their support! #healthed
Fragile X Australia retweeted
Exciting NEW article available online for RAPIDD.
Free for ASID members. Member log in here: bit.ly/3OkcosT
Great addition to our Future Planning series - looking at the role of a microboard in supporting a person with disability. Register via our website News tab.
Fragile X Australia retweeted
Just one week to go till the first annual conference of the National Centre of Excellence in Intellectual Disability Health. Learn more about the Centre and share ideas about how we can improve intellectual disability health. Recordings will be available after the conference. Register at events.peanutproductions.com…
@CIDvoice @DownSyndromeAu @FPDNAus @MaterNews @QDNltd @telethonkids @mdi_unimelb @DisabilityHlth @CDS_Sydney @MaterResearch @inclusionoz @QCIDD @FragileXAus @PWDA @UNSWMedicine
Today we celebrate World Fragile X Day! A day to celebrate & support people living with #fragilexsyndrome or the FX-associated conditions. A day to support awareness, promote inclusion & acknowledge a need for advances in diagnosis & treatments.
#worldfragilexday @FRAXAresearch
Special! @telstra Tower shining on #WorldFragileXDay eve to celebrate the Fragile X community. Oliver and Fraggel were in on the action - and will be out & about in Canberra tonight to check out other major landmarks lighting up for #fragilex
Of course we are! 22 July is #worldfragilexday and we love to celebrate across the nation. With thanks to the many infrastructure owners /operators & local councils who get behind #fragilex each year. Shoutout @FRAXAresearch for giving 22 July an international focus!
What's on the horizon for #fragilexsyndrome ? Join us tonight to hear from Katie Clapp @FRAXAresearch on exciting steps forward: new treatment targets, efforts to reactivate the FMR1 gene, insights from current clinical trials. #fxwebinarseries
us02web.zoom.us/meeting/regi…
Fragile X Australia retweeted
Calling all #FragileX rearchers @FragileXAus @fragilexuk @FragileXCanada for this special edition:
mdpi.com/journal/ijms/specia… convened by esteemed colleagues Dr Tassone and Dr Hagerman
Fragile X Australia retweeted
The Count Us In campaign aims to create meaningful change by raising awareness, advocating for policy reforms, and empowering people affected by neurological conditions.
Find out more 👉 bit.ly/3VVEpfe
#CountUsInNeuro
Perth - 800 GPs in the room here at #healthed Women's & Children's Education Day. GPs keen to understand how to engage with patients whose carrier screening test results indicate high chance of having a child with #fragilexsyndrome #cysticfibrosis #SMA
#carrierscreening
Fragile X Australia retweeted
Thrilled to collaborate with @CDS_Sydney on the first Australian study about adults living with #fragilexsyndrome Exploring support needs, health & wellbeing, daily living challenges, ageing.
@odonovan_marya
Next up in our webinar series - first of two LIVE ONLY sessions on future planning for a child/adult with disability. 60-min presentation by Margaret Duncan, plus Q&A. Register here: us02web.zoom.us/meeting/regi…
#fxwebinars
Are you supporting an adult living with #fragilexsyndrome We're working with @CDS_Sydney to explore the support needs and health & wellbeing of adults living with Fragile X. Our survey for care teams launches in May.
#fragilexcare
