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Thanks to Nas Campanella for chairing our lived experience panel - including Dr Meredith Prain, Paralympian Jenna Jones, 🌎 tennis pro Arato Katsura + mum & clinician-researcher Ceecee Britten-Jones. The #IRDPatientDay panel talks about adapting to a diagnosis and living well.

Take part in / share our James Lind Alliance Priority Setting Partnership to identify the top 10 research priorities for Inherited Retinal Disease. Telling us what matters most to you will guide the future of research. CMRI unsw.au1.qualtrics.com/jfe/form/SV_bv…

Psychological wellbeing among parents of a child living with a serious chronic illness: A cross-sectional survey study. doi.org/10.1177/136749… Available now! Eden Robertson, PhD Lauren Kelada PhD لورين كيلادا R Ilin (Elizabeth) Emma Palmer (she / her) A Bye Adam Jaffe S Kennedy Dr Keith Chee Y. Ooi D Drew Claire Wakefield PhD 🎗️

Unable to attend the 2024 Inherited Retinal Disease Patient & Family Engagement Day? You can now access the presentation recordings online: youtube.com/playlist?list=… Save Sight Institute Retina Australia CMRI Able Australia Vision 2020 Australia RANZCO Australasian Society of Genetic Counsellors (ASGC) Deafblind Australia

For those that were unable to attend the Inherited Retinal Disease Patient & Family Engagement Day in person, you can now access the recordings of the presentations here: youtube.com/playlist?list=… You can also check out our event blog here: unsw.edu.au/news/2024/03/i… #IRDPatientDay

NEW📄: perspectives of surgeons re: childhood cancer precision medicine 1️⃣➕attitudes / concerns abt families' unrealistic expectations 2️⃣ mixed opinions on benefits & research-only biopsies 3️⃣ perceived genetics knwldge👍🏽/ confidence in making tx recs👎🏽 doi.org/10.3390/jpm130…

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…

🆕MANUSCRIPT - Our video provides families w/ the "gist information" abt #biobanking to facilitate engagement w/ written info & consent discussions. - Our video was acceptable to, and highly valued by patients/caregivers & health profs. For free access: authorcite.com/view.aspx?doi=…

We are using your responses to our @visionlossPSP surveys to guide workshop discussions. Join our two half-day, online workshops (August 8 & 9) to decide on the final research priorities for IRDs. Submit your EOI: unsw.au1.qualtrics.com/jfe/form/SV_6l… CMRI Stem Cell Medicine Group and Organoid Facility A/Prof Lauren Ayton

Be a part of deciding the research priorities for IRDs in Australia. Workshops will run for ~3hrs on 2 days in August, w/ individuals who have lived experience & health professionals agreeing to the final top 10 priorities. 2 weeks to submit your EOI! unsw.au1.qualtrics.com/jfe/form/SV_6l…

Peak behind the scenes of a psychosocial study running alongside a precision medicine trial for high-risk childhood cancer. This paper is for those looking to collect #PREMs / #PROMs within a #clinicaltrial. doi.org/10.1002/cam4.7… Claire Wakefield PhD 🎗️ Prof David Ziegler Rebecca Daly

📢 Have you or a loved one been diagnosed w/ cancer before their 19th bday? We want to hear what unanswered questions you have about child & adolescent cancer. Take 15-mins out of your day to tell us & be a part of driving future research in this field! qsurvey.qut.edu.au/jfe/form/SV_38…

Even snuck an opportunity for an impromptu pic of this brilliant team! 🤩 So proud of how the BSU has grown, but especially how our research has evolved to be more driven by the voices of young people + families — measuring and targeting what truly matters to them 💪🏻 #AYACSM

~1 in 1,000 Aussies have an inherited retinal disease (IRD). IRDs are the leading cause of blindness in working aged adults & remain largely untreatable. Today we launch the IRD research priorities NSW Parliament House. Listen to our 3-min ABC News interview here: abc.net.au/listen/program…

1/2 Key research priorities for Inherited Retinal Disease (IRD) have been established in an Australian-first project led by UNSW Dr Eden Robertson, PhD. Created in partnership with individuals living with an IRD, the priorities are a crucial step towards more impactful IRD research.

📢 Participate in our survey to tell us what u think about the future of stem cell therapies for retinal conditions. We want to hear from u if you: 👁️‍have an inherited retinal disease; 👁️‍have AMD; or 👁️care for someone with either of these conditions. bit.ly/stemcell2025

What can YOU do to make our world more equitable?🌏 Health equity starts w/ inclusive research. Check out our new paper about making research more accessible for those with a vision impairment - relevant beyond just vision-focussed researchers! onlinelibrary.wiley.com/doi/10.5694/mj…

Whatever It Takes: Parents' Perspectives of Patient-Derived Xenograft Mouse Models for Poor Prognosis Childhood Cancer. Co-authored by Eden Robertson, PhD #pedonc Read more. brnw.ch/21wRZj7

#StudyAlert: Do you have an inherited retinal disease, age-related macular degeneration or are a caregiver of someone with either of these conditions? Participate in a short online survey to share your thoughts on the future of cell therapies: bit.ly/stemcell2025