Fragile X Australia (@fragilexaus) 's Twitter Profile
Fragile X Australia

@fragilexaus

Connections, information, support & advocacy for the Fragile X community - those living with Fragile X syndrome or Fragile X Premutation-Associated Conditions.

ID: 2395644319

linkhttps://linktr.ee/FragileXAustralia calendar_today18-03-2014 04:54:49

1,1K Tweet

1,1K Followers

497 Following

Fragile X Australia (@fragilexaus) 's Twitter Profile Photo

Thrilled to collaborate with CDS on the first Australian study about adults living with #fragilexsyndrome Exploring support needs, health & wellbeing, daily living challenges, ageing. @odonovan_marya

Thrilled to collaborate with <a href="/CDS_Sydney/">CDS</a>  on the first Australian study about adults living with #fragilexsyndrome Exploring support needs, health &amp; wellbeing, daily living challenges, ageing. 
@odonovan_marya
Fragile X Australia (@fragilexaus) 's Twitter Profile Photo

Are you supporting an adult living with #fragilexsyndrome We're working with CDS to explore the support needs and health & wellbeing of adults living with Fragile X. Our survey for care teams launches in May. #fragilexcare

Are you supporting an adult living with #fragilexsyndrome    We're working with <a href="/CDS_Sydney/">CDS</a>  to explore the support needs and health &amp; wellbeing of adults living with Fragile X.   Our survey for care teams launches in May.
#fragilexcare
Fragile X Australia (@fragilexaus) 's Twitter Profile Photo

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/regist… #fxwebinars

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&amp;A.  Register here: us02web.zoom.us/meeting/regist…
#fxwebinars
Fragile X Australia (@fragilexaus) 's Twitter Profile Photo

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

Perth - 800 GPs in the room here at #healthed Women's &amp; 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
Neurological Alliance Australia (@neuroallianceau) 's Twitter Profile Photo

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

Fragile X Australia (@fragilexaus) 's Twitter Profile Photo

What's on the horizon for #fragilexsyndrome ? Join us tonight to hear from Katie Clapp FRAXA Research on exciting steps forward: new treatment targets, efforts to reactivate the FMR1 gene, insights from current clinical trials. #fxwebinarseries us02web.zoom.us/meeting/regist…

What's on the horizon for #fragilexsyndrome ?  Join us tonight to hear from Katie Clapp <a href="/FRAXAresearch/">FRAXA Research</a> on exciting steps forward: new treatment targets, efforts to reactivate the FMR1 gene, insights from current clinical trials.  #fxwebinarseries
us02web.zoom.us/meeting/regist…
Fragile X Australia (@fragilexaus) 's Twitter Profile Photo

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 FRAXA Research for giving 22 July an international focus!

Of course we are! 22 July is #worldfragilexday and we love to celebrate across the nation. With thanks to the many infrastructure owners /operators &amp; local councils who get behind #fragilex each year. Shoutout <a href="/FRAXAresearch/">FRAXA Research</a> for giving 22 July an international focus!
Fragile X Australia (@fragilexaus) 's Twitter Profile Photo

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

Special!  <a href="/telstra/">Telstra</a> Tower shining on #WorldFragileXDay eve to celebrate the Fragile X community. Oliver and Fraggel were in on the action -  and will be out &amp; about in Canberra tonight to check out other major landmarks lighting up for #fragilex
Fragile X Australia (@fragilexaus) 's Twitter Profile Photo

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 FRAXA Research

Today we celebrate World Fragile X Day! A day to celebrate &amp; support people living with #fragilexsyndrome or the FX-associated conditions. A day to support awareness, promote inclusion &amp; acknowledge a need for advances in diagnosis &amp; treatments.
#worldfragilexday <a href="/FRAXAresearch/">FRAXA Research</a>
Intellectual Disability Health (@nceidh) 's Twitter Profile Photo

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.

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.
Fragile X Australia (@fragilexaus) 's Twitter Profile Photo

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.

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.
Inclusion Australia (@inclusionoz) 's Twitter Profile Photo

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/health-checks #ItsDoctorTime #IntellectualDisability

Autism Awareness Aus (@autismawareaus) 's Twitter Profile Photo

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

Fragile X Australia (@fragilexaus) 's Twitter Profile Photo

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 & Victorian Clinical Genetics Services (VCGS) for their support! #healthed

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 &amp;  <a href="/TeamVCGS/">Victorian Clinical Genetics Services (VCGS)</a> for their support! #healthed
Fragile X Australia (@fragilexaus) 's Twitter Profile Photo

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/regist…

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/regist…
Intellectual Disability Health (@nceidh) 's Twitter Profile Photo

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 Dementia Australia Research Foundation and the Bartle Pathway to Care. Find out more at our project page 3dn.unsw.edu.au/projects/under…

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 <a href="/DementiaAus/">Dementia Australia</a> Research Foundation and the Bartle Pathway to Care. Find out more at our project page 3dn.unsw.edu.au/projects/under…
Fragile X Australia (@fragilexaus) 's Twitter Profile Photo

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 (@fragilexaus) 's Twitter Profile Photo

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/regist…

Kicking off our 2025 webinar series -  a discussion on medications and #fragilexsyndrome with Dr Jonathan Cohen. Thurs 20 Feb 8pm AEDT.  Live Q&amp;A after the presentation.  
Shoutout to <a href="/Qantas/">Qantas</a> Side by Side grant program for their support.
#fxwebinarseries
us02web.zoom.us/meeting/regist…