Sign in

Rare Disease Clinical Trial Network

@rarediseasectn.bsky.social
667 followers 669 following 324 posts

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.

PostsRepliesMedia
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 08/10/2026
⚡ Clinical Trial Spotlights: Hear what’s happening in rare disease trials At this year’s Rare Disease Research Conference, three short spotlights will bring us updates from different areas of rare disease trials and advanced therapies.
110 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 05/10/2026
What will it take to bring innovation in orphan medical devices into practice? Developing technologies for small and highly specialised patient populations brings particular challenges, from innovation and evidence generation through to regulation and implementation.
Alt text: Promotional graphic for the Rare Disease Research Conference on 5 November at O’Reilly Hall, UCD, Dublin. Session titled “Orphan Medical Devices: Innovation & Regulation,” featuring regulatory, industry and research perspectives from Dr Donal O’Connor, HPRA; Gwynne Morley, IQVIA and HealthTech Ireland; and Dr Anneliene Jonker, University of Twente.
110 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 30/09/2026
Just over a month to go! We’ll hear about orphan medical devices, patient partnership, clinical trials, drug repurposing, data systems, policy and innovative research across the rare disease community. 📅 5 November 📍 O’Reilly Hall, UCD 🎟️ Registration: www.eventbrite.ie/e/rare-disea...
Promotional graphic for the Rare Disease Research Conference 2026, marking “One month to go.” The conference takes place on 5 November at O’Reilly Hall, UCD, Dublin. Featured themes are Clinical Trials, Patient Partnership, Innovation & Regulation, Emerging Research, and Devices & Repurposing. Logos appear across the top.
010 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 30/09/2026
Spotlight Series: highlighting researchers in Ireland who are improving rare disease understanding, treatment, and care. ✨ Meet Dr Julie Worrell, whose focus is on understanding the contributions of lung stromal immune cell interactions to tissue homeostasis, injury, and repair. 🔬
110 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 08/09/2026
Rare conditions require international collaboration! Ireland has 21 patients enroled in the EuRREB Core Registry for rare phosphate disorders, among the highest in Europe. The module captures patient-reported outcomes, so patients' experiences are evidenced. A positive milestone for the community!
030 3
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 03/09/2026
#PulmonaryFibrosisAwarenessMonth increases understanding & highlights research that helps to change what care & treatment can look like. A lot happening at @svuh.bsky.social, including 6 clinical trials across IPF and PPF! Building capacity & opportunities for Irish trials is important.
110 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 13/08/2026
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...
A screenshot of the submission page reading: Rare Disease Research Conference 2026: Abstract Call
CALL IS OPEN
DEADLINE: Friday, 28th August

We hope that you will join us at the Rare Disease Research Conference 2026  to share knowledge and expertise alongside world leading rare disease researchers, patient advocates, industry representatives and other stakeholders. 

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.
010 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 30/07/2026
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...
Yellow luggage at an airport terminal
001 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 28/07/2026
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...
030 3
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 20/07/2026
⏰ 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...
021 2
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 24/06/2026
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:
Front cover of the "European Journal of Public Health" (Volume 36, Number 4, August 2026), published by Oxford University Press in partnership with the European Public Health Association (EUPHA). The top section is solid blue with white text. Below, the main image features a dark map of Europe covered in a heat map style overlay, with glowing clusters of light transitioning from blue to green, yellow, and intense red, showing dense concentrations across central and western Europe.
222 2
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 19/06/2026
🔬 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...
An informational graphic with a purple-to-green gradient background. The top left features the "Rare Disease Clinical Trial Network" logo next to a prominent banner reading "RESEARCHER SPOTLIGHT". On the left is a square-shaped headshot of a woman with brown, wavy hair. To her right is her name and professional title. The bottom half contains a white text box with research details and a website link.
110 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 18/06/2026
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...
002 2
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 03/06/2026
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
A photo of a woman smiling at the camera with a frame of colours and tags from ECRD
010 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 27/05/2026
🔬 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....
Profile graphic featuring Dr Kasia Whysall, Associate Prof at University of Galway, a researcher in rare disease. The graphic includes their photograph, affiliation, and key research areas including her work in V-ATPase disorders. This image is part of the Rare Disease Research Network Researcher Spotlight series highlighting researchers across Ireland.
000 0
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 26/05/2026
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...
A screenshot from the registration page, "Masterclass: Rare Diseases — From European partnership programmes to clinical practices, 10 June 2026, 17:30 - 19:30, CPD Accreditation with RCPI applied for"
010 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 21/05/2026
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
A team of people facing the camera in front of a poster, three of them are holding posters to support the TSC initiative
020 2
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 15/05/2026
Nature occasionally gives us something rare and wonderful, like this @ucddublin.bsky.social duckling. 💛 This little one reminds us exactly why we do what we do. Rare is beautiful, and rare deserves our best research!
A post from UCD saying "The UCD lake welcomed a new family this spring, and one of the ducklings stands out from the crowd.

A pure yellow duckling - highly unusual and rare in the wild. 
🦆🐥" 

with a photo of four ducks, one is yellow
021 2
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 11/05/2026
A day of reflection and celebration as the PPI Ignite Network progresses to the next phase. Congrats to all the returning and new partners, including our colleagues at @hrci.bsky.social - Health Research Charities Ireland. Great things are in store!
000 0
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 05/05/2026
A massive well done to the IPPOSI graduates, including RDCTN PPI Partners, Brona Kearney and Caroline Vaughan. They’ve finished the Patient Education Programme, bringing even more knowledge and passion for meaningful PPI to our team. We are so grateful to work alongside you!
010 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 21/04/2026
We are thrilled to see an exciting trend in Irish healthcare: investment in roles that strengthen the link between clinical care and research. We believe that data is the fuel for future breakthroughs, and that's why we are delighted that @svuh.bsky.social has welcomed Nijat Ahmadi!
A man in a black jacket stands next to a banner with rare disease colours on it.
110 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 15/04/2026
Strengthening Rare Disease Care at St. Vincent's University Hospital @svuh.bsky.social 🏥 The rare disease landscape in Ireland is gaining momentum, and we're thrilled to see "better outcomes" become reality. A big welcome to Athira Mariam Kurian, the ERN Data Manager for Rare Bone Diseases!
A woman with dark hair looking at the camera, wearing a white shirt
100 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 09/04/2026
A fabulous achievement by Stephanie Sangalang, PhD, MSc, RN (Research Fellow at RDCat, UCD School of Nursing, Midwifery and Health Systems) for taking home the runner up award for best oral research presentation at the RAiN All Ireland Fest! 🏆
A woman with dark hair standing at a podium, while wearing a yellow blazer
120 2
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 07/04/2026
We are delighted to welcome Dr. Vikas Reddy V to St. Vincent's University Hospital as the new ERN-LUNG Data Manager! With a background as a PharmD and an MSc in Healthcare Informatics, he brings a powerful combination of clinical insight and data expertise. @svuh.bsky.social
A man wearing a black suit and glasses, smiling at the camera
100 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 02/04/2026
RDCTN co-lead, Prof Rachel Crowley, is looking forward to the European Calcified Tissue Society (ECTS) conference, where she is an invited speaker! She will be speaking on X linked hypophosphatemic rickets (XLH), a rare condition that has been at the heart of our work in RDCTN.
A flyer for the conference with QR code to register
100 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 01/04/2026
Huge congratulations to John Coleman (RDCat Fellow & SpR Clinical Genetics) for winning the Best Oral Presentation award at RAiN Fest! 🏆 His project utilises research to improve timely diagnosis for children with rare diseases in Ireland. @rareireland.bsky.social
A colourful award next to a white plaque
110 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 28/03/2026
Delighted to join RAiN Fest today in University College Dublin, thank you to Dr. Suja Somanadhan and Prof AJ McKnight for bringing together rare disease stakeholders from all across the island, as "rare disease has no borders"
130 3
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 26/03/2026
What’s happening in Irish Rare Disease Research? All these stories, and more, coming soon to your inbox (but only if you’re a subscriber!) To stay in the know, sign up for our newsletter today: eepurl.us8.list-manage.com/subscribe?u=...
000 0
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 23/03/2026
From PhD candidates exploring genetic bases to Professors leading international clinical trials, the Irish researcher community is working in labs, clinics, and universities across the country to improve the understanding, treatment, and care of rare diseases.
100 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 19/03/2026
Don’t just do the work, let the community see it! Join Ireland’s Rare Disease Researcher Network. Research can often feel like a solo journey, but it doesn't have to be. Joining the network is fast (2 min!) and free. Complete the online form: rarediseaseresearch.ie/researcher-n...
110 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 05/03/2026
Save the Date! Join us for Optimising Recruitment & Retention in Clinical Trials. We've teamed up with UCD CRC, @hrb-tmrn.bsky.social, ICC CTN , and ID-CTNI for an essential day of learning and networking. 🗓️ May 26 🕘 9 am – 4 pm 📍 O'Reilly Hall, UCD 🔗 Register: www.eventbrite.ie/e/optimising...
033 3
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 04/03/2026
RDCTN and @ucdmedicine.bsky.social were delighted to host the inaugural PH-ILD Forum in collaboration with @univparissaclay.bsky.social and Royal Brompton Hospital/ @imperialcollegeldn.bsky.social. The meeting brought together global experts from 14 countries!
A group of people standing facing the camera with two blue and purple screens behind them
110 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 26/02/2026
The rare disease community has long called for more inclusive research. What better way to mark #RareDiseaseDay than by moving from 'the saying' to 'the doing'? Check out the new guide to EDI in PPI, now available! rarediseaseresearch.ie/public-and-p...
A stack of printed guides sitting on a blue background
010 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 21/01/2026
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...
Three printed guides laying on a blue background
110 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 08/01/2026
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...
110 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 02/01/2026
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.
A woman wearing graduation robes and glasses stands in front of a glass building
210 2
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 18/12/2025
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.
A slide with the quote, “The EURO-NMD Registry unite expert clinicians across Europe focusing on tackling the biggest challenges including the diagnosis, treatment and management of rare and complex neuromuscular diseases. The Registry offers a great opening to advance research, improve patient care and enhance healthcare systems for neuromuscular patients in Ireland.”  Dr Stela Lefter, Irish EURO-NMD Lead
120 2
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 15/12/2025
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
A screencap from the job advertisement webite
022 2
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 08/12/2025
Beaumont Hospital is among the top European contributors to the ERKReg rare kidney disease registry!
The ERKReg registry allows multiple specialised centres across Europe to collaborate in the study of rare kidney diseases. Through these research initiatives, we will be better able to look after patients so affected.
220 2
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 05/12/2025
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!
Two women smiling at the camera in a crowded room
000 0
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 28/11/2025
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!
A woman stands in front of a screen in a dark room
010 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 24/11/2025
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!
000 0
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 21/11/2025
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!
Two women standing in front of a pullup for the event
020 2
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 20/11/2025
⏰ 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....
000 0
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 18/11/2025
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!
A woman smiling in front of the RDCTN banner
010 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 17/11/2025
⏳ 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....
111 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 17/11/2025
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!
Two women standing in front of a banner for the event
131 3
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 12/11/2025
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!
A screenshot of a webpage, which reads: At UCD Conway Institute, we are passionate about the work that we do and the potential it has to positively impact on society. We believe that our research is more relevant when stakeholders are actively engaged in the process. Through engaging with patients and the public, our research can reflect their valuable perspectives and is more likely to have a greater impact. Through engaging with teachers and pupils, researchers can help to ignite a spark of curiosity and raise aspirations of STEM (science, technology, engineering and math) careers.
000 0
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 04/11/2025
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!
A photo of a lecture room
110 1
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 03/11/2025
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...
A photograph of a slide presented at the conference with an assortment of publications showing
100 1