Vision Loss Priority Setting

Health professionals & individuals with lived experience working together to make a difference for those impacted by Inherited Retinal Diseases.

[Vision Loss Priority Setting @VisionLossPSP]

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

[Vision Loss Priority Setting @VisionLossPSP]

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.
https://t.co/ZoxTEOCYEd
@RANZCOeyedoctor @SydneySaveSight @HGSAAustralasia @UsherKids @RetinaAustralia @GCAustralasia @Vision2020Aus

[Vision Loss Priority Setting @VisionLossPSP]

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

[Vision Loss Priority Setting @VisionLossPSP]

EOI form: https://t.co/ZoxTEOCYEd

[Vision Loss Priority Setting @VisionLossPSP]

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

[Vision Loss Priority Setting @VisionLossPSP]

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.
https://t.co/pehxKiUyXE

[Vision Loss Priority Setting @VisionLossPSP]

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!
https://t.co/pehxKiUyXE

[Vision Loss Priority Setting @VisionLossPSP]

Unable to attend the 2024 Inherited Retinal Disease Patient & Family Engagement Day? You can now access the presentation recordings online: https://t.co/zI1tM3EC33

@SydneySaveSight @RetinaAustralia @CMRI_AUS @AbleAus @Vision2020Aus @RANZCOeyedoctor @GCAustralasia @DeafblindAust

[Vision Loss Priority Setting @VisionLossPSP]

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: https://t.co/pehxKiUyXE

[Save Sight Institute @SydneySaveSight]

Contribute to the future of inherited retinal disease (#IRD) research by sharing which questions you think researchers should be focusing on the most! 🤔

Scan the QR code on the survey or click the link: https://t.co/WQOQrhLf2b

[Vision Loss Priority Setting @VisionLossPSP]

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!
https://t.co/pehxKiUyXE

[Vision Loss Priority Setting @VisionLossPSP]

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

[Vision Loss Priority Setting @VisionLossPSP]

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

[Vision Loss Priority Setting @VisionLossPSP]

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

[Vision Loss Priority Setting @VisionLossPSP]

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

[Vision Loss Priority Setting @VisionLossPSP]

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

[Vision Loss Priority Setting @VisionLossPSP]

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

[Vision Loss Priority Setting @VisionLossPSP]

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

[Vision Loss Priority Setting @VisionLossPSP]

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

[Vision Loss Priority Setting @VisionLossPSP]

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

[Vision Loss Priority Setting @VisionLossPSP]

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

[Vision Loss Priority Setting @VisionLossPSP]

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.
https://t.co/lN4UzOvRPU

[Vision Loss Priority Setting @VisionLossPSP]

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.
https://t.co/9m1MZ5ddeC

[Vision Loss Priority Setting @VisionLossPSP]

@AustVisRes of interest :)

[Vision Loss Priority Setting @VisionLossPSP]

#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.
https://t.co/lN4UzOvRPU