@VisionLossPSP profile picture
Vision Loss Priority Setting @VisionLossPSP

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

Joined April 2023
  • Tweets 35
  • Following 41
  • Followers 13
18 Photos and videos
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
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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/f… @RANZCOeyedoctor @SydneySaveSight @HGSAAustralasia @UsherKids @RetinaAustralia @GCAustralasia @Vision2020Aus

Vision Loss Priority Setting@VisionLossPSP
3 Jun 2024
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
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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
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EOI form: unsw.au1.qualtrics.com/jfe/f…
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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/f…

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

Save Sight Institute@SydneySaveSight
26 Apr 2024
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: bit.ly/3wREqa5
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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/f…
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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
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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
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Truly inspiring, Santiago Velazquez living with vision impairment and breaking barriers. He’s a @ChurchillFship, founder and CEO of @eye_syght and Hailo #IRDPatientDay
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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
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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
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Thank you to all the Exhibitors participating in #IRDPatientDay 2024 @RetinaAustralia, @GuideDogsAUS @UsherKids, Paediatric Vision Impairment Alliance, @CMRI_AUS, Halo, @SydneySaveSight and @Luminesce_All
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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
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Dr Alan Ma discussed diagnosis and management of #InheritedRetinalDisease highlighting the importance of early genetic testing and collaboration with geneticist, ophthalmologist and councillors #IRDPatientDay.
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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
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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
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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/inh…
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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=MMK0Vzrc…

What are Inherited Retinal Diseases? (Auslan and English)

Inherited retinal diseases, or IRDs, are the leading cause of blind...

youtube.com
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#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/inh…

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@AustVisRes of interest :)
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