Have a project you'd like to share? We are pleased to invite abstract submissions of case studies and rare disease research for consideration for poster presentation and oral presentation at the conference. Call closes 28th August! rarediseaseresearch.ie/conference-2...

Today, we’re launching our new three-part #ResearchExplained series. In the first story, we explore precision medicine, what it could mean for #ALS, and FutureNeuro’s role in #PrecisionALS, a European research programme. 🔗 futureneurocentre.ie/research-exp... @researchireland.ie

Research Explained: From Discovery to Patient Impact - FutureNeuro

Every breakthrough in neuroscience starts with a question, but understanding what they really mean, and why they matter to patients and families, isn’t always straightforward.  In this new FutureNeuro...

futureneurocentre.ie

Calling all rare disease researchers and clinical trialists! We are conducting an anonymous, 2 minute survey to map research needs across Ireland. Your input is essential to understand what researchers need to conduct more trials! docs.google.com/forms/d/e/1F...

Clinical Trial Experience Survey

docs.google.com

Enjoying well-deserved time off? It's not too late! 𝗔𝗯𝘀𝘁𝗿𝗮𝗰𝘁 𝘀𝘂𝗯𝗺𝗶𝘀𝘀𝗶𝗼𝗻𝘀 𝗮𝗿𝗲 𝗲𝘅𝘁𝗲𝗻𝗱𝗲𝗱 𝘁𝗼 𝟮𝟴 𝗔𝘂𝗴𝘂𝘀𝘁, so you can enjoy your break. Thank you to everyone who spent their summer days getting abstracts in, we appreciate the dedication! 😎 Submit & register: rarediseaseresearch.ie/conference-2...

Our Spotlight Series highlights Irish researchers who are improving rare disease understanding, treatment, and care. 👋 Meet the Human Genetics Research Group at RCSI, whose focus is on rare monogenic forms of epilepsy, kidney disease, and pulmonary fibrosis. rarediseaseresearch.ie/researcher-n...

🔬 AI and ATMPs are reshaping rare disease research. Join ERDERA’s new Ethics & Regulatory Webinar Series to stay ahead. 🔗 Find out more and register: https://loom.ly/dh8UKe0 #ERDERA #RareDiseases #ResearchEthics #ATMP

🧬 For millions of people living with rare diseases, getting a diagnosis is the first step towards care and support. This #GeneticTestingActionDay, we highlight the role of genetic testing in shortening the rare disease diagnostic odyssey. 🔗 Learn more: https://go.eurordis.org/testingday

⏰ Call for abstracts closing THIS FRIDAY! Great research shouldn't stay in the lab - share your findings with the community! As an Associated EU Presidency Event, the conference is a platform to showcase your work to experts across Europe and beyond. rarediseaseresearch.ie/conference-2...

🚨 ERDERA Clinical Trial Call now open! Supporting multinational Phase I–II trials in rare diseases. 🔎 Explore the call: https://loom.ly/climfrw 🎓 Webinar 6 July. Register at https://loom.ly/Zey54D0 🔁 Help spread the word! #ERDERA #RareDiseases

🧩 How can national rare disease registries drive better research across Europe? 💡 At ERDERA’s National Mirror Groups workshop in Riga, experts shared lessons on creating, evolving and using registries to strengthen collaboration and research. Find out more🔗 https://loom.ly/Br-vMRA

🏆 At #ESHG2026, Jessie Dubief received the 2026 GertJan Van Ommen Citation Award for EURORDIS' research on diagnostic delays. Together with discussions on genomic newborn screening, the conference reaffirmed the importance of putting patients at the heart of genetics research.

Calling All Rare Disease Researchers! We are pleased to invite abstract submissions of case studies and rare disease research for consideration for poster and oral presentation at the Rare Disease Research Conference on the 5th November 2026 in UCD. rarediseaseresearch.ie/conference-2...

A child's chance of early diagnosis should not depend on where they are born. On #NewbornScreeningDay, we are calling for stronger European cooperation on newborn screening to ensure equity for every newborn across Europe. 🔗 https://go.eurordis.org/newborn-call

📢 Ready to help shape the future of rare disease research? IRDiRC is looking for experts to join its Interdisciplinary Scientific Committee. Be part of advancing global collaboration and innovation. Apply by 27 July: https://irdirc.org/call-for-new-members/

More than 20 of Europe's top scientists and researchers are in Dublin this week for a meeting of the European Research Council

Europe's top scientists, researchers to gather in Dublin

More than 20 of Europe's top scientists and researchers are in Dublin this week for a meeting of the European Research Council.

rte.ie

Closing the gap in European rare disease research funding! Rare disease patients in some European countries miss out on clinical trials and treatments. RDCTN co-lead Prof Rachel Crowley is working with ERDERA to change that, shaping fairer health policies across Europe. 🤝 More:

🔬 Our Spotlight series highlights researchers across Ireland improving rare disease understanding, treatment & care. Meet Eva Woods (Trinity College Dublin, McMackin Lab) studying neurological disorders. Join the network: rarediseaseresearch.ie/researcher-n...

Calling All Rare Disease Researchers! We are pleased to invite abstract submissions of case studies and rare disease research for consideration for poster and oral presentation at the Rare Disease Research Conference on the 5th November 2026 in UCD. rarediseaseresearch.ie/conference-2...

🌍 How are clinical research networks advancing rare disease research worldwide? Highlights from the 2nd CRN Conference are now live 👇 📄 Access the event report: https://loom.ly/kmtHQKc #RareDiseases #ClinicalResearch

Know what's like to live with a rare disease? You can shape how RD care is understood & delivered - in Ireland & beyond. Share your input: rdi.ie/prem/ ✅ 30 min ✅ Anonymous & confidential ✅ For patients & caregivers ✅ No research background needed

Less than a week until the Rare Disease Masterclass! Online, 90-minutes, delivered by RCPI & RDCat, for early-career and senior medical professionals. A series of rapid-fire talks and short presentations, register now to join us!

Rare Disease Clinical Trial Network@rarediseasectn.bsky.social · 3mo ago

Calling all medical professionals! Join an online Rare Disease Masterclass, delivered by RCPI & RDCat. Support care management for rare patients and get an overview of research capacities, networking schemes, funding opportunities and interesting cases. web-eur.cvent.com/ev...

#ECRD2026 opened this morning in Prague with a clear message: Europe has the knowledge, the momentum and the community needed to act. Now it needs coordination, political will and implementation. 👉 Stay tuned and join us online: https://go.eurordis.org/register-in

We're delighted to attend the European Conference on Rare Diseases and Orphan Products (#ECRD)! View our poster, #118, describing the co-creation of the EDI in PPI Guide, a project developed with PPI Partners & colleagues at HRCI. @hrbireland.bsky.social @eurordis.bsky.social

🔬 Research is a marathon, not a sprint! Our Spotlight series highlights researchers across Ireland improving rare disease understanding, treatment & care. Meet Dr Kasia Goljanek-Whysall (University of Galway) studying V-ATPase disorders. Join the network: rarediseaseresearch....

Calling all medical professionals! Join an online Rare Disease Masterclass, delivered by RCPI & RDCat. Support care management for rare patients and get an overview of research capacities, networking schemes, funding opportunities and interesting cases. web-eur.cvent.com/ev...

The RDCTN team & our partners at Rare Disease Research Catalyst Consortium (RDCat), are proud to join #TSCGlobalVirtualRelay for Tuberous Sclerosis Complex (TSC) awareness! Follow the digital baton across all 7 continents! #TSCGlobalDay #ConnectingTheWorld4TSC #LighttheWay

"On this #ClinicalTrialsDay, it is important to recognise that accelerating innovation also means transforming the clinical trial ecosystem itself." Well said, @eurordis.bsky.social! 👏 By changing how trials are run, we can bring hope & opportunities closer to people who need them most.

EURORDIS-Rare Diseases Europe@eurordis.bsky.social · 3mo ago

💉On this #ClinicalTrialsDay, Rita Francisco, our Patient Engagement Manager, explores how the RealiseD project is reshaping rare disease clinical trials through innovative designs, patient engagement, and multi-stakeholder collaboration. 👉Read more: https://go.eurordis.org/yIi4Mw

💡 What is PPIE — and why is it such a central concept in ERDERA? Our latest Knowledge Pill explores Patient and Public Involvement and Engagement (PPIE): what it is, why it matters, who is involved, and how #ERDERA puts it into practice. 🔗 Find out more: https://loom.ly/FWzBQpg #RareDiseases

🎓 Unlocking knowledge in #RareDiseases Explore the new ERDERA Learning Portal — your hub for curated courses & training resources for researchers, clinicians & the wider community 🌍 👉 Discover the portal: https://loom.ly/mFHgMVI #RareDiseases #ERDERA

📣 Join our webinar on 28 May to discover how ERDERA is advancing rare disease diagnostics. 🕐 13:00–14:00 CEST, online 🔗 Find out more and register: https://loom.ly/eZk0EsA