Rare Disease Clinical Trial Network
HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core.
- ✨ SAVE THE DATE ✨ Our next Rare Disease Research Conference is set for 5th Nov 2026. Reflecting on the powerful insights and community spirit from our conference in April. We've been busy planning and are thrilled to announce... we're doing it again! youtu.be/-Hd_u66NbTc?...
- Reposted by Rare Disease Clinical Trial Network💡How is #ERDERA shaping the future of the #RareDisease research ecosystem? Recently, we invited members to reflect on key achievements, the partnership’s significance, and their hopes for the future. Watch the video loom.ly/axqoMwU 👇 #ERDERA #RareDisease #EUHealth
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial Network🚀 RealiseD is launching a survey to identify what drives enrolment in #ClinicalTrials across rare & ultra‑rare conditions. Open to HCPs, academia, industry, regulators, sponsors & patient advocates! 🔒 Strictly anonymous 🗓️ Open till 28 January 2026 👉 All the info: loom.ly/rJ5A7Ik
- Reposted by Rare Disease Clinical Trial Network🌍 Save the date for #ECRD2026, a leading patient-led policy event on rare diseases | 3–4 June | Prague & online This year’s theme: “Rare Diseases in a changing and competitive Europe: shaping policies to address the unmet needs of people living with rare diseases” 🔗 Info: loom.ly/kNumRPA
- Reposted by Rare Disease Clinical Trial NetworkApply to ERDERA's Networking Support Scheme! 💡Funding for events that connect experts on #RareDiseases & #RareCancer 🌍 Boosts inclusion of underrepresented countries 📅 Apply anytime – second deadline: 7 April 2026 🔗 loom.ly/scOFS9w #ERDERA #ResearchFunding
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- We’ve been asking ourselves, "Is our PPI truly inclusive?" and "How can we do this better?" That’s why we’re excited to launch a new, friendly guide to EDI in PPI, developed with our partners in HRCI! 📅 25 February 🕛 12pm–1pm 💻 Zoom Register here: ucd-ie.zoom.us/webin...
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Recruiting the right patients for clinical trials is a big challenge. In rare and ultra rare diseases, it can become even more challenging. What are the reasons behind it and how can we overcome them? Take the survey to help @realised-ihi.bsky.social shape the present and future of RD trials!
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Our friends at HRB-TMRN, Institute for Clinical Trials and Diabetes Collaborative Clinical Trial Network are hosting Lunch and Learn - an in-person lunchtime lecture series, open to all interested in knowing more about clinical trials. Learn more: stories.universityof...
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- We are thrilled to announce the appointment of Anila Soosan Varghese as Rare Bone Coordinator at St. Vincent's University Hospital. In rare disease, the treatment journey can be complex; this new role is designed to bridge gaps & elevate the standard of care for patients.
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Whoa… is it almost 2026 already? 😲 Before we welcome the new year, we’re taking a look back at the roadmap that got us here. Our 2024 Conference report is still a must-read. The power of collaboration is leading us into next year! 🔗 Full report: rarediseaseresearch....
- The EURO-NMD (European Reference Network for Rare Neuromuscular Diseases) Registry opened at the Beaumont Hospital and has been actively recruiting patients, increasing access to research and care. Led by of Dr Stela Lefter, Consultant Neurologist and Irish ERN EURO-NMD Lead.
- Delighted to see our article, featuring IMPALA 2 trial participant Linda Sheehan, in this campaign. Linda's story highlights the importance of access to trials and their potential to transform the lives of people living with rare diseases.
- Our colleagues in RDCat (Rare Disease Research Catalyst Consortium) are a group of Irish-based healthcare professionals, researchers, advocacy groups and people living with rare diseases. They are seeking a new team member! www.ucd.ie/workatucd... Job Ref: 019222, Closing 2/1/26
- Beaumont Hospital is among the top European contributors to the ERKReg rare kidney disease registry!
- Network Manager Suzanne McCormack chaired at this event. Registries are especially critical for our rare disease community. If we don't know who is living with these conditions, we can't plan for/fund their care. Count everyone, because everyone counts.
- Our network manager Suzanne McCormack was proud to attend and support the incredible work being done by the Irish Research Nurses and Midwives Network. We must ensure trial designs respect and support the patients who make research possible. Thank you for an inspiring event!
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial Network📅 Save the date! #ECRD 2026 will take place on 3–4 June in Prague, under the theme “Rare diseases in a changing & competitive Europe: shaping policies to address unmet needs”. ✨ Find out more and register 👉 loom.ly/kNumRPA #RareDisease #OprhanDrugs #ECRD #Research #PatientVoice
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Huge thanks to Dr. Cassy Dinius, PPI Liaison Officer with the RDCTN, for a great talk at UCD Conway this week! 🏥 She showed why PPI is vital for impactful research and isn't just a box to tick. Inspiring insights on how partnership keeps research relevant and accessible!
- RDCTN welcomes the publication of 'Transforming Ireland's Clinical Trials Landscape: A Blueprint for Implementation' - we are excited for what this will mean for patients, especially those living with rare diseases!
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial Network📣 Join our webinar on the 2026 Joint Transnational Call! ERDERA’s new call will focus on solving unsolved rare disease cases through variant validation and advanced technologies. 🔸Info: lnkd.in/erMJCeGn 🔸Register to the webinar: loom.ly/d45a8o8 #ERDERA
- Reposted by Rare Disease Clinical Trial NetworkFinal chance to register for the 2nd International Conference on Clinical Research Networks! 📩 Join the global rare disease community this December, in Germany or online. 🌐 Co-organised by ERDERA, RDI and IRDiRC. ✍🏼 Programme & registration: loom.ly/1fhf8zI #RareDiseases #ClinicalResearch
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Taking a peek back at the Tuberous Sclerosis Conference organised by our Management Committee and PPI Panellist Mary Vasseghi. RDCTN co-lead Prof Cormac McCarthy gave an overview of the rare lung condition LAM (lymphangioleiomyomatosis) in the context of TSC. Well done to all!
- Huge congrats to our partners at @hrci.bsky.social! We were delighted to attend the Irish Health Research Forum workshop, "It's Time to Speak Up for Health Research." Inspiring discussion on how the research community can speak with a stronger, united voice to policymakers & the public!
- ⏰ The clock is ticking! Don't forget, the deadline for our Seed Funding is this coming Monday, Nov 25th. Are you an emerging & early-career researcher looking to build data for a new Rare Disease intervention or trial? This is for you! Apply: rarediseaseresearch....
- Our Network Manager Suzanne McCormack was delighted to represent RDCTN at the 49th Irish Endocrine Society Annual Meeting last week. Huge thanks to the IES committee for inviting us and for organising such an excellent meeting!
- ⏳ Just one week to go! The deadline for our Seed Funding Application is next Monday, Nov 24th. This is a fantastic opportunity to support early-career research. We're passionate about #PPI, so tell us your plans for collaboration! Learn more & apply: rarediseaseresearch....
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- We were delighted to attend the 9th Trials Methodology Symposium - thanks to @hrb-tmrn.bsky.social, @ucc.ie, @sensitise-eu.bsky.social for organising a wonderful program. Also great to catch up with colleagues in @in4kids.bsky.social and Breakthrough Cancer Research!
- Highlights were from @marcikayrn.bsky.social on incorporating lived experience into Core Outcome Set development, from Emer Gunne on predicting outcomes for interstitial lung disease using tech and from @streweek.bsky.social, @trialforge.bsky.social on making trials more informative and inclusive!
- Excited for our PPI Liaison Officer to deliver an upcoming talk on #PPI and research impact at UCD for the Conway Lecture & Seminar Series (CLASS). Fantastic to see so much interest from early-career researchers who are keen to expand their skills and build strong partnerships!
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reflecting on the powerful insights and community spirit from our conference in April. www.youtube.com/watc... We've been busy planning and are thrilled to announce... we're doing it again! ✨ SAVE THE DATE ✨ Our next Rare Disease Research Conference is set for 5th Nov 2026.
- Hurry! In less than 3 weeks, our Seed Funding Application is due! This is a great chance for ECRs to build pilot data for an intervention or trial. We encourage all applicants to have meaningful collaborations with PPI partners in the proposed research.
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial NetworkAttend our joint seminar with @ucdresearch.bsky.social: Engagement for Research Impact 12th November 2.30pm Link 3, James Joyce Library This session will help you understand the complex area of research impact, incl. how to measure your impact within academia & more. Register👉 bit.ly/engage1211
- A big shout-out to our friends HRCI! They're hosting the Irish Health Research Forum in Nov/Dec. This crucial event brings all stakeholders together to shape Irish health research. Highly recommend!
- Are you interested in keeping up to date with the work of HRCI? Our next newsletter will be published shortly- sign up to our mailing list to make sure you receive news, Irish Health Research Forum invitations and links to our latest publications. http://eepurl.com/gF...
- We were delighted to be at the ERDERA 2nd General Assembly in Amsterdam! It's wonderful to join our colleagues from HRCI. Together, we're supporting the vital PPIE work package, aimed at enabling rare disease research across Europe. Collaboration at its best!
- Big congrats to our UCD colleague, Keith Smart! 👏 His work on improving clinical trials for Complex Regional Pain Syndrome was featured by Realise D at the WODC in Amsterdam. A crucial step forward for research into this condition. Read the paper here: journals.lww.com/pai...
- Reposted by Rare Disease Clinical Trial Network🚀 The #ERDERA General Assembly has kicked off, marking one year after the launch! 1️⃣ Started with the first in-person meeting of the Multistakeholder Advisory Board 2️⃣ Continued with the open sessions on scientific advances & lived experiences 🔗 More: loom.ly/VXpdiqQ
- An inspiring couple of days at the Orphan Drug World Congress hearing about successes, solutions and new innovations in rare disease care, research and therapy development. Great to see patient centricity as a central theme. Catching up with our colleagues was a bonus!
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Reposted by Rare Disease Clinical Trial Network[Not loaded yet]
- Ready, set, RESEARCH! Our seed funding call for early-career researchers is OPEN! We're looking for pilot projects for new interventions & clinical trials. ⏰ Deadline is next month! Have you started your application yet? Apply now: rarediseaseresearch....
- Time for a Clinical Trial Spotlight! We're excited to share another rare disease study happening right here in Ireland. Congrats to the brilliant teams driving this vital work forward and the patients taking part. See other trials at: rarediseaseresearch....
- A European Reference Network (ERN) affiliated registry, EuRREB, opened recruitment at SVUH under the lead of Prof Rachel Crowley, Consultant Endocrinologist, Irish ERN Lead. The registry facilitates collaboration with EU partners on a range of rare endocrine and bone conditions.
- CALL OPEN To support emerging and early career researchers in building pilot data aimed at developing an intervention and/or preparing for a clinical trial. We encourage applicants to include meaningful collaboration with PPI Partners in the proposal. rarediseaseresearch....
- RDCTN co-lead Prof Cormac McCarthy will be chairing a valuable session at the upcoming Centre for Respiratory Disease 16th International Meeting, 'State Of The Art', held at St Vincent's Univ Hospital on Friday, 10th October. Register your interest by emailing e.gough@svuh.ie
- Delighted to attend the National PPI Festival Launch today! Great to be here, celebrating partnership and sharing learnings. Events are happening all across Ireland this month as part of the PPI Festival, a fabulous time to learn together! @ppi-ignite-net.bsky.social
