ERN-ITHACA

Met with @eurordis to discuss how we can accelerate innovation and deliver new treatments faster to all Europeans living with rare diseases. Moving forward decisively on the #BiotechAct, #ERNs, and #CMA will be key to making this a reality. #RareDiseases

In the latest episode of #EurordisRareOnAir, @TomaszGrybek shares his journey across two continents for a treatment for his son and how this led him to advocate for patient involvement in medicines regulation. 👉 Tomasz & Boris’s story: go.eurordis.org/RareOnAir

My #TEDx talk about #rarediseases and #undiagnoseddiseases. I truly belive that by raising public and healthcare awareness about RDs, by supporting treatment and of course by global collaboration we can save lives of individuals with RARE DISEASES! youtu.be/CvQIUZEvfpA?si…

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

📣 ERDERA is happy to announce a new facilitation period for the MOOC: “Diagnosing Rare Diseases: From the Clinic to Research and Back”! 📅 12 May – 4 July 👉 Get expert support, ask questions & boost your knowledge in #RareDiseases 🔗 More at loom.ly/88Of0Ps

@euro_nmd, @ERN_RND, @Metab_ERN, @ERNIthaca, and EpiCARE will be present at the 2025 EPNS Munich Congress from July 8–12. Visit us at the joint booth at Intercongress GmbH!

🧬Submit your abstract for the 2025 Eurodysmorpho in Vilnius 16th-19th Sept 2025🗓️The new deadline for abstract submission is Friday 6th June 2025 ⏰(tinyurl.com/ytk74apt) Registration fee 30€. Presentation of a clinical case necessary to participate @eshg_young @ERNIthaca

5 days left to submit your abstract for EuroDysmorpho! This workshop a great opportunity to showcase your dysmorpho cases, receive feedback, and connect with peers in a collegial atmosphere. Don't miss out, especially if you're a young geneticist! ern-ithaca.eu/events-news/eu…

We are here at the @eshgsociety 2025 in Milan! Join us in the booth 550! #ESHG #ERN

Our turn to present our network to the Board of Members States and to show how impactful ERNs are! Next step is heading to Milan for the @eshgsociety Congress🧬where we'll be sharing a booth with @euro_nmd, ERN EYEs and Genturis. See you there!

📣 ERDERA is happy to announce a new facilitation period for the MOOC: “Diagnosing Rare Diseases: From the Clinic to Research and Back”! 📅 From 12 May – 4 July, get expert support, ask questions & boost your knowledge in #RareDiseases 🔗 More at loom.ly/88Of0Ps

🚨 We're hiring at #ERDERA! Join us to make a difference in the rare disease field. We're looking for: 🟣 Office Manager (Bilingual) 🟣 Senior Policy and Liaison Manager Apply now 👉 loom.ly/zyG-yz0 📣 Spread the word and help us find the right talent! #Jobs #RareDiseases

🧬Abstract submission for EuroDysmorpho 2025 is available on our website until may 31st! EuroDysmorpho is a 30+ year meeting open to any presentation in the field of human development. 🗓️17-20 Sept. 2025 📍Vilnius, Lithuania To know more: ern-ithaca.eu/events-news/eu…

Don't miss out our MOOC on #RareDiseases diagnosis ! 🎯Public: primarily medical students and Phd but also ePAG, paramedics - anyone interested 🚨 May 12 - July 4, a new facilitation period where mentors will be available to answers students questions futurelearn.com/courses/rare-g…

It's official! ✨Abstract submissions now open for #ASHG25 🧬 Share your latest research in human genetics and genomics on a world-class stage 🗓️ Deadline: June 9, 2025, at 5 PM U.S. ET 🔗 Submit here: lnkd.in/e3Sjqw2x #humangenetics #genomics #ASHG

First organised by Prof. Dian Donnai in 1984, the MDC is now a leading biennial international event for experts in 🧬 #Dysmorphology #CongenitalMalformations #NeurodevelopmentalDisorders #GenomicMedicine #RareConditions Looking forward to welcoming friends from around the 🌍

How can knowledge graphs inform us on the complex networks involved in rare diseases? 🤔 Join the #ERDERA Rare Disease Maps Workshop. 👉 📅 6–7 May | 15:00–17:00 CEST 🔗 Register day 1: loom.ly/FbDXOYM 🔗 Register day 2: loom.ly/6g90KSk

Get ready for an unforgettable EPNS Congress experience in Munich 8-12 July 2025 #childneurology #EPNS2025 epns-congress.com @EU_Brain @EANeurology @ERN_RND @EpiCARE_ERN @euro_nmd @mackeithpress @senep_es @icnapedia @EACDtweet @ERNIthaca @BPNA_org @IlaeWeb @BrainDays

The abstract deadline for Curating the Clinical Genome is approaching! #CCG2025 Submit by 15 April⏰ Present your research to leaders working in the clinical #genomics and #biodata communities, and build your professional profile.🧬 📅11 - 13 June 📎 bit.ly/4fb77QI

📢We're thrilled to announce the 3rd edition of our EuroNDD meeting! We offer this unique workshop to serve as an important forum for researchers, clinicians, and patient advocates to connect, exchange ideas, and drive progress in the field of rare NDDs. Spread the word! #EuroNDD