📬 The latest IRDiRC newsletter is out! Did you miss it? No worries — you can catch up on all the latest highlights, updates, and opportunities in the #RareDisease research community. 👉 Read it here: loom.ly/J3TUSKg #ResearchCollaboration #IRDiRC #ERDERA

🔔 Join us on 23 June at 17:00 CEST for the launch of the Together for Rare Diseases Toolkit – a key resource to boost ERN-industry collaboration in #RareDisease research. 🔹 Practical tools 🔹 Real-world cases 🔹 Expert speakers 👉 Register: loom.ly/9TZyyX4 #ERDERA #Together4RD

📣 Daria Julkowska will speak at Science Magazine & Fondation Ipsen webinar: "Bridging Silos: How Scientists Studying Rare Disease Are Building Cross-Disease Communities to Advance Research and Innovation" 📅 25/06 at 6 p.m. CET 🔗 Register to join at: loom.ly/1oH4heY

🧬 A pilot project launched under #ERDERA’s predecessor (#EJPRD) is now a reference model for public–private collaboration—accelerating drug discovery to detect genetic changes linked to 30+ rare neurological conditions. Ollscoil na Gaillimhe | University of Galway LoQus23 Therapeutics 🔗 Read more: loom.ly/Ro-hf6g

🔔 Still time to join the launch of the Together for Rare Diseases Toolkit – a key resource to boost ERN-industry collaboration in #RareDisease research. 🔹 Practical tools 🔹 Real-world cases 🔹 Expert speakers 👉 Register: loom.ly/9TZyyX4 #ERDERA #Together4RD

🔔 Call for DSC members🧬👥 Are you a diagnostic lab scientist from North America, N/C Asia or Australasia? Join us to advance rare disease diagnosis! 🗓️ Apply by 23 July 2025 📩 CV, biosketch & motivation letter ➡️ scientific.secretariat[at]irdirc.org

Make your voice heard!🗣️ #ERDERA has launched a survey to explore how #RareDisease patients can contribute to EU-funded research. 🔐 Confidential & created with patients 🔗 Take the survey: shorturl.at/ePVuL (open until mid-July) 📄 More: shorturl.at/c03db EURORDIS-Rare Diseases Europe

🆕 ERDERA shares that EU Medicines Agency has published has published a new SOP titled: “Validation, Publication, and Maintenance of Real-World Data Sources and Studies in the HMA-EMA RWD Catalogues”. 📄 Learn more: loom.ly/rofu5E8 #ERDERA #RealWorldData #EMA

🗣️ The EU has opened a public consultation on how to implement #AI Act rules for high-risk systems. 🤝 Help shape future guidelines with your feedback. 👉 loom.ly/6VB9xrQ #PublicConsultation #ERDERA

At a recent high-level webinar hosted by Science Magazine and the Fondation Ipsen - Rare but not Alone Daria Julkowska expressed #ERDERA's perspective to rare disease research ecosystem. 🔗 Read more about this insightful webinar: loom.ly/LRrEwx8

📢 The new T4RD Toolkit by Together for Rare Diseases & #ERDERA is here! It supports collaboration between #ERNs and life sciences companies with practical guidance based on real rare disease community experience, including #MetabERN 🤝 🔗 Learn more: loom.ly/SeshMlU

Last chance to make your voice heard!🗣️ #ERDERA has launched a survey to explore how #RareDisease patients can contribute to EU-funded research. 🔐 Confidential & 🤝 Co-created with patients 🔗 Take the survey: shorturl.at/ePVuL 📄 More: shorturl.at/c03db EURORDIS-Rare Diseases Europe

📣 ERDERA is seeking specialists to join our expert pool! Get involved in activities, panels & networking, plus access funding, training & more. Interested? 👉 loom.ly/YUHruUQ 🗣️ Share with those who might be interested!

🤝 #PublicPrivate #collaboration isn’t a risk — it’s the route to faster #RareDisease therapies. In this interview, EFPIA’s Magda Cheblus explains how seamless EU funding paths and #OpenDialogue can move discoveries from lab to life. 📄 Read on: loom.ly/3fUYfMY

👥 #RareDisease #Patients as equal partners—in Brussels and beyond. At IPOPI’s Brussels forum, ERDERA’s Dr Daria Julkowska set out a vision where lived experience shapes research from the start. 🔗 Read more: loom.ly/ifI80KE

🎙️ “Research must align with real patient needs.” In our latest conversation, Tomasz Grybek —@EURORDIS board member and MetabERN advocate—shares how his family’s #RareDisease journey shaped his view on cross-border science. 🔗 Read more: loom.ly/BWwEPTg

👉 A first in personalised medicine: #CRISPR treatment for a baby sparks new debate on rare disease therapies. 🔗 Read the full article on this unprecedented medical milestone here: loom.ly/pYb-OuI #ERDERA

🌍 Over 150 participants from 30 underrepresented countries joined the first #ERDERA Jamboree in Prague & online! The event spotlighted inclusion in #RareDisease diagnostic research & the need for equitable access to innovation. 🔗 Read more: loom.ly/GoLgpvk

📣 Do you know about #ERDERA's Networking Support Scheme? 👇 It funds events that boost rare disease & rare cancer knowledge exchange. 👩‍⚕️ For researchers, clinicians, advocates & more. 📅 Apply by 7 Oct 2025 🔗 loom.ly/CwIvcvM #ResearchFunding #RareDiseases #RareCancers