🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

"Widespread service fragmentation for patients and families with tuberous sclerosis complex (TSC) in the Republic of Ireland". rdcu.be/dRh5h

A national audit in the ROI highlighting the need for a formal TSC clinic in Ireland to prevent inefficiencies and variability of care. Thank you Mary Vasseghi 👏

Rare Ireland annual conference. Speakers include Anne Lawlor from 22Q11 Ireland and care Co ordinator Wesley Mulchay who will highlight the success of the 22q clinic and the need for co ordination for #PLWRD register here for tickets eventcreate.com/e/rareireland2…

This week' Off Script podcast, we hear from Professor Colin Doherty, Head of the School of Medicine on the future of medicine & the challenges we face, from AI to climate change & misinformation. Listen on tinyurl.com/yk4j93ws

✨New research from our PhD student Mary Vasseghi shows why Ireland needs a TSC Centre of Excellence with a dedicated coordinator to ensure continuous, personalised care for those living with TSC. futureneurocentre.ie/moving-toward-…

Our team had an amazing time at #EEC2024 in Rome! 🎉Huge shoutout to all the FutureNeuro Centre researchers who presented their research on miRNA precision therapy, epilepsy & temperature changes, and more. We’re so proud of you all! #Epilepsy #Neurology #Neuroscience

A jam packed few days in Rome, filled with learning and networking with inspiring leaders. So grateful for the opportunity to present my work at the ILAE European Epilepsy Congress International League Against Epilepsy #EEC FutureNeuro Centre Colin Doherty St James's Hospital School of Nursing & Midwifery, TCD School of Medicine, Trinity College Dublin @scienceirel

Almost 600 in attendance at #Respond2024 for the 10th National ⁦❤️ CFR Ireland ❤️⁩ conference! It all started in a kitchen in Bray…!

Delighted to connect with friends, partners and colleagues at the HSE Ireland Patient & Public Partnership Conference 2024 at Dublin Castle. Looking forward to meeting new people and plenty of discussion on public and patient partnership in the health care service! #HSEPPP

An excellent insight into managing sleep in rare endocrine conditions from Prof Rachel Crowley and a lovely plug for RDCTN as well! #iessfe2024 ⁦Rachel Crowley⁩ Endocrine Society⁩ ⁦Irish Endocrine Society⁩ ⁦European Society of Endocrinology (ESE)⁩ ⁦Society for Endo⁩

Welcome news - Clinical Trials improve the lives of people living with rare diseases, by enabling development of new treatments (drugs, devices, procedures & processes). Without trials healthcare services comes to standstill. Rare Disease Clinical Trial Network, Ireland CancerTrialsIreland 🌈 Health Research Charities Ireland - HRCI Rachel Crowley

💡 Researchers! 💡 New to #RStudio or just need a refresher? Our #RStudio Introduction is here to help you navigate, start projects, and analyse data with ease! 📊✨ Check it out & share your feedback to help us improve our tools for the community! 👇rarediseaseresearch.ie/toolbox/

Save the date! 📅 We are thrilled to announce the Rare Disease Research Conference on Thursday, 10th April in University College Dublin O'Reilly Hall. The Abstract Submission will be available soon, stay tuned!

Calling all Rare Disease Researchers! We invite abstract submissions of case studies and rare disease research for consideration for poster presentation at the Rare Disease Research Conference 2025. Registration and full programme details to follow! docs.google.com/forms/d/e/1FAI…

Well said Bernadette Sheehan Gilroy advocates and patients organisations need support- very limited funding allocated to support the psychosocial support for people living with rare diseases- individually rare conditions but collectively common in our society #RareDisease RAiN

🚨 Call for experts: IRDiRC seeks experts to support 5 new activities in rare diseases research : 🔹Preventive Medicines 🔹Regulatory Convergence 🔹Youth Engagement 🔹Stigma 🔹Bridging Diagnostics & Therapies 📅 Apply by Feb 9, 2025 For details : irdirc.org/call-for-membe…

New Publication Alert in hashtag#Rarediseases 🌟 📢 Assessing the supportive care needs of parents of children with rare diseases in Ireland. sciencedirect.com/science/articl… Children's Health Ireland UCD School of Nursing, Midwifery & Health Systems University College Dublin Prof AJ McKnight RAiN Rare Diseases Ireland RARE Ireland EURORDIS-Rare Diseases Europe

Rare But Real- Not Just a Number: Children and Young People Speak Up abo... youtu.be/Og3GC8uzURk?si… via YouTube Today, we had the honour of previewing this video at the Office of the Ombudsman, and we are thrilled to finally share it with you! Rare Diseases Ireland EURORDIS-Rare Diseases Europe

📜 Navigating Irish regulations and ethical approvals for rare disease research? Our guide provides all the essential information on regulatory processes and ethical requirements to help ensure your clinical trials meet necessary standards. Learn more 👉 rarediseaseresearch.ie/irish-regulati…

SAVE THE DATE: March 22nd. Calling all in Cork for the #MyMovingBrain event. Join our colleagues and Brain Awareness Week partners FutureNeuro Centre for inspiring talks, inclusive sports, and important conversations on brain health 🧠