@edenrobertson.bsky.social
Behavioural scientist dedicated to understanding and addressing the psychosocial needs of people impacted by a serious health condition - current inherited retinal diseases & AMD ⭐️ Postdoc, UNSW ⭐️ Senior researcher, CMRI ⭐️ Fulbright Scholar
#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
📢 Participate in our survey to tell us what you think about the future of stem cell therapies for retinal conditions.
We want to hear from you if you:
👁️🗨️ have an inherited retinal disease;
👁️🗨️ have AMD; or
👁️🗨️ care for someone with either of these conditions.
bit.ly/stemcell2025
Such an interesting paper @brookenickel.bsky.social @sydneyhealthlitlab.bsky.social! Social media influencers can mislead the public about the benefits/risks of tests such as multicancer early detection test & for AMH. Stronger regulation is needed. #NotSponsored #NotAnAd
28.02.2025 04:05 — 👍 2 🔁 1 💬 0 📌 0
Kris Pierce from #SCN2A Australia & #ChildUnlimited, UNSW shares that #consumerengagement is especially critical for rare diseases due to the complexity, uncertainty, diagnostic challenges, limited research / tx options & lifelong impact of the disease. #RareDiseaseDay
28.02.2025 03:47 — 👍 0 🔁 0 💬 0 📌 0
Lecture theatre with woman speaking at a podium at the front and a large projection screen.
@emmagenetics.bsky.social opens the #RareDiseaseDay event, highlighting some of the common challenges faced by the 300mill ppl impacted by a rare disease worldwide. From the diagnostic odyssey, limited info, to lack of holistic care - together w/ families, we must pave the future for rare diseases.
28.02.2025 02:02 — 👍 1 🔁 1 💬 1 📌 0
Looking forward to the #RareDisease Day tomorrow!
I will share some of my work in inherited retinal diseases to highlight some of the innovative rare disease research, care, advocacy and service design being conducted across the Randwick Health & Innovation Precinct. Hope to see you there!
Join us at two awesome free #rarediseaseday events on the 28th Feb and 1st March at Sydney Children's Hospital in Randwick.
Building community and connections
Register links here rarediseasesnsw.org.au/home/news-ev...
Please share with your networks!