https://xitter.cf/t.co/hGZjQCukos - ERN-EYE is a European Reference Network dedicated to Rare Eye Diseases.
Strasbourg, France
Joined January 2018
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Crisis readiness for rare disease populations
A study conducted across all 24 ERNs in 2025 has highlighted major gaps in preparedness for ensuring continuity of rare disease care during crises.
The article was published in The Lancet Regional Health-Europe.
👁️ ERN-EYE at #EVER2026 in Florence 🇮🇹!
From 15–17 October, we were delighted to meet ophthalmologists and vision researchers from across Europe and beyond at the #EVER Congress.
🔗 evercongress.org/
#RareEyeDiseases #Ophthalmology #ERNs
ALT Pr Isabelle Audo speaking during a session
ALT ERN-EYE booth
Got 30 seconds? Here's your quick post-summer ERN-EYE update! ☀️
🔹 ERNs call for Rare Diseases and crisis preparedness 📃
🔹 "Inside the ERNs" Q&A series 🎬
🔹 ERN-EYE Scientific Workshop in Florence, Italy 🇮🇹
🔹 Upcoming ERN-EYE webinar on X-linked retinoschisis 💻
📢 Don't miss the upcoming ERN-EYE webinar on X-Linked Retinoschisis!
📅 Friday, 30 Oct. 2026
🕠 2:00 - 3:00 pm CET
Register here ➡️ urlr.me/GT8BtB
🎬 Missed the joint ERN-EYE and ERN-EuroBloodNet webinar on Rare Anterior Segment Manifestations of Hematological Disorders?
The replay of our lastest webinar is now available: urlr.me/xBmBAt
👍 Like, comment and share!
ERN-EYE retweeted
Join our Campaign Launch Webinar on 19 or 20 October to discover the new campaign materials, key updates and practical insights to help you start planning campaign activities in your national context. 🌍
Register now! go.eurordis.org/nCtB6m
📢 Don't miss the upcoming joint ERN-EYE and ERN-EuroBloodNet webinar on Rare Anterior Segment Manifestations of Hematological Disorders!
📅 Thursday, 17 Sept. 2026
🕠 4:00 pm CEST
Register now 👉 urls.fr/cQWB4b
📢 Don't miss it!
Don’t miss our next webinar, Databases as Essential Tools for Inherited Retinal Disorders, on 22nd July at 20:00 CEST.
It's free to join!
Sign up here: ow.ly/GPl250ZmWjV
#Euretina #MedicalEducation #RareDiseases #Ophthalmology #Webinar
🤝 Great working afternoon yesterday with Luca Sangiorgi, coordinator of @ern_bond - European Reference Network on Rare Bone Diseases, discussing exciting opportunities for future inter-ERN projects. Collaboration is key to advancing care for people living with rare diseases!
ALT Luca Sangiorgi, Hélène Dollfus and the ERN-EYE management team
ALT Luca Sangiorgi, Hélène Dollfus working with the ERN-EYE management team in a meeting room
The latest issue of the Retina ry magazine includes an interview of Dr @joniturunen, on the ERN-EYE meeting in Helsinki and the role of international collaboration in inherited retinal disease research and patient care. #eyegeneticsgroup
ALT Our PI Joni Turunen in Retina ry magazine Turunen shares insights from the European ERN-EYE meeting held in Helsinki (April 2026) “International collaboration is essential for improving diagnosis, care and treatment for people with inherited eye diseases.” ERN-EYE connects experts across Europe to advance research, clinical care and patient support in rare eye diseases.
Got 30 seconds? Here's what happened at ERN-EYE this June ☀️
🔹 #ECRD2026 in Prague 🇨🇿
🔹 #ESHG2026 in Gothenburg 🇸🇪
🔹 MPS MasterClass throwback 🔙
🔹 PAX6 webinar now available ▶️
🔹 Upcoming joint webinar with @EuroBloodNet 💻
#ERNEYE #RareEyeDiseases #Ophthalmology
🎬 Missed our ERN-EYE webinar on Congenital aniridia PAX6 and differential diagnosis?
The replay of our lastest webinar is now available: urls.fr/dp10z1
👍 Like, comment and share!
ERN-EYE retweeted
Have you registered yet? 👀
🚀 ERDERA Clinical Trial Call 2026 launches 1 July
🧬 Supporting multinational early‑phase trials in rare diseases
Join our webinar (6 July, 15:00–17:00) for guidance + Q&A with experts.
🔗 Find out more and register at: loom.ly/Zey54D0
📷 Reliving the ERN-EYE 2026 General Annual Meeting in Helsinki! 🇫🇮
Optix take you back through two days filled with insightful discussions that reinforced European collaboration on rare eye diseases, driving progress in care, research, and treatment 👇 urls.fr/NT_rcX
ERN-EYE’s May updates 👀
1️⃣ 2026 Scientific Workshop coming soon 📅
2️⃣ Interview w/ Dr Petia Stratieva & Pr Kaneva 🎤
3️⃣ Webinar on congenital aniridia (PAX6) 💻
4️⃣ Throwback: Transition in Rare Diseases Workshop 🔙
5️⃣ Replay available: joint ERN-EYE × Endo-ERN webinar on BPES ▶️