Vision Loss Priority Setting

Our Priority Setting Partnership is in the home stretch, w/ workshop participants to now decide on the final top research priorities for inherited retinal diseases. Submit your EOI to participate! @SydneySaveSight @RetinaAustralia @RANZCOeyedoctor @HGSAAustralasia @LindAlliance

Drive the future of IRD research! 2 wks left to submit your EOI to be a part of finalising the research priorities for inherited retinal diseases. unsw.au1.qualtrics.com/jfe/form/SV_6l… @RANZCOeyedoctor @SydneySaveSight @HGSAAustralasia @UsherKids @RetinaAustralia @GCAustralasia @Vision2020Aus

EOI form: unsw.au1.qualtrics.com/jfe/form/SV_6l…

Our Priority Setting Partnership is in the home stretch, w/ workshop participants to now decide on the final top research priorities for inherited retinal diseases. Submit your EOI to participate! @SydneySaveSight @RetinaAustralia @RANZCOeyedoctor @HGSAAustralasia @LindAlliance

Just over 2 wks left to tell us what research into Inherited Retinal Diseases matter most to you. From a list of 40 research questions, tell us the 10 that you consider a priority to answer. Complete online or DM to be sent a paper version. unsw.au1.qualtrics.com/jfe/form/SV_bv…

Unable to attend the 2024 Inherited Retinal Disease Patient & Family Engagement Day? You can now access the presentation recordings online: youtube.com/playlist?list=… @SydneySaveSight @RetinaAustralia @CMRI_AUS @AbleAus @Vision2020Aus @RANZCOeyedoctor @GCAustralasia @DeafblindAust

From over 200 submissions to our first survey, we have collated a list of 40 research questions about Inherited Retinal Diseases. Of these, which ones are most important to you?👁️ Participate in our short, anonymous survey here: unsw.au1.qualtrics.com/jfe/form/SV_bv…

With limited 💵 & time, its critical that research is prioritised that is most meaningful to those impacted by it. This is why we are inviting individuals w/ an Inherited Retinal Disease to tell us what matters most to them. Take part now! unsw.au1.qualtrics.com/jfe/form/SV_bv…

A great way to end #IRDPatientDay 2024 with a panel discussion hosted by Nas Campanella. An amazing group of people from all walks of life sharing their experiences #InheritedRetinalDisease Merideth Prain, Jenna Jones, Junko and Arato Katsuda and Ceecee Britten-Jones

During lunch time we had Jennifer extracting DNA from strawberries and @SCMGroup_SCOF presenting posters. A great opportunity to meet patients their families and health professionals to learn more about #InheritedRetinalDisease #IRDPatientDay @CMRI_AUS

Truly inspiring, Santiago Velazquez living with vision impairment and breaking barriers. He’s a @ChurchillFship, founder and CEO of @eye_syght and Hailo #IRDPatientDay

Currently, there’s only 1 TGA approved treatment option for #InheritedRetinalDisease Leber Congental Amaurosis. Prof Robyn Jamieson shared insights on the huge amount of work to get this Gene Therapy approved in Australia. #IRDPatientDay @CMRI_AUS

Did you know we can model the retina in a dish? A/Prof Anai Gonzaez-Cordero uses stem cells and organoids to identify novel treatments for #InheritedRetinalDisease @CMRI_AUS @SCOF_SCM #IRDPatientDay

Thank you to all the Exhibitors participating in #IRDPatientDay 2024 @RetinaAustralia, @GuideDogsAUS @UsherKids, Paediatric Vision Impairment Alliance, @CMRI_AUS, Halo, @SydneySaveSight and @Luminesce_All

Learning about Advanced Therapies for #InheritedRetinalDisease. A/Prof Lauren Ayton from @UniMelb gave a great summary about the possible therapy options for different severities of IRD’s. #IRDPatientDay

Dr Alan Ma discussed diagnosis and management of #InheritedRetinalDisease highlighting the importance of early genetic testing and collaboration with geneticist, ophthalmologist and councillors #IRDPatientDay.

Opening the first session for #IRDPatientDay 2024 was Prof John Grigg. Introducing #InheritedRetinalDisease highlighting the challenges in identifying signs and symptoms of IRD and using an interdisciplinary approach in management of IRD

Finally, the first Vision loss Patient engagement day is here! Patients, Carer’s, Clinicians and Scientist coming together to understand the TOP 10 Priorities for #InheritedRetinalDisease #IRDPatientDay

Have you registered for the upcoming #IRDPatientDay? 📅23 March, from 9am 📍Ultimo, Sydney Only a few spots remaining to hear from experts in the field & our lived experience panel incl. Australian Paralympian Jenna Jones and chaired by Nas Campanella. events.unsw.edu.au/event/inherite…

Only a few more weeks to register for our #InheritedRetinalDisease Patient & Family Engagement Day. #IRDPatientDay Not sure whether you or a loved one have an IRD? Our video explainer in Auslan & English might help. youtube.com/watch?v=MMK0Vz…

@AustVisRes of interest :)

#IRDPatientDay Speaker🔦 Excited to share that @DrLaurenAyton from @UniMelb & CERA will present @ the #IRDPatientDay - 23/3, Sydney. Register for #IRDPatientDay to hear Lauren present on some exciting technologies being developed for people with an #IRD. events.unsw.edu.au/event/inherite…