iiinova — where your digital self keeps evolving

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

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

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

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

Reposted by Rare Disease Clinical Trial Network

REMEDi4ALL @remedi4all.bsky.social · 01/09/2026

Are you a patient representative curious about #DrugRepurposing? Join us at the #REMEDi4ALL Repurposing Bootcamp in Barcelona on 10-11 June 2027! A unique chance to learn, collaborate & share through lectures, workshops, and discussions. Apply now! 🔗 loom.ly/H2FxxGE

011

Reposted by Rare Disease Clinical Trial Network

LifeArc @lifearc.bsky.social · 01/09/2026

Are you searching for support, information or connections in the rare disease community? Raremap helps you find charities, patient organisations and more: raremap.co.uk/

031

Reposted by Rare Disease Clinical Trial Network

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...

001

Reposted by Rare Disease Clinical Trial Network

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 04/08/2026

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...

docs.google.com

Clinical Trial Experience Survey

021

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

Reposted by Rare Disease Clinical Trial Network

FutureNeuro Centre @futureneuro.bsky.social · 12/08/2026

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

futureneurocentre.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...

054

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 04/08/2026

docs.google.com

Clinical Trial Experience Survey

021

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 30/07/2026

001

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

Reposted by Rare Disease Clinical Trial Network

ERDERA @erdera.bsky.social · 14/07/2026

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

021

Reposted by Rare Disease Clinical Trial Network

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 25/07/2026

🧬 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: go.eurordis.org/testingday

Father and child reading together, with overlapping text about genetic testing for unexplained symptoms.

031

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

Reposted by Rare Disease Clinical Trial Network

ERDERA @erdera.bsky.social · 01/07/2026

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

021

Reposted by Rare Disease Clinical Trial Network

ERDERA @erdera.bsky.social · 02/07/2026

🧩 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🔗 loom.ly/Br-vMRA

011

Reposted by Rare Disease Clinical Trial Network

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 29/06/2026

🏆 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.

Six professionals stand on stage holding red folders during a conference event with a large screen behind them.

Group of five women wearing conference badges and red lanyards standing together in front of a stage with a colorful screen backdrop.

Panel of five experts seated behind a table at the European Human Genetics Conference 2026 speaking to an audience in a dark auditorium.

011

Reposted by Rare Disease Clinical Trial Network

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

Reposted by Rare Disease Clinical Trial Network

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 28/06/2026

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. 🔗 go.eurordis.org/newborn-call

Close-up of a baby's hand with a blurred face, highlighting a call for EU collaboration on newborn screening by EURORDIS.

031

Reposted by Rare Disease Clinical Trial Network

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 30/06/2026

📢 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: irdirc.org/call-for-new-members

Call for experts to join the Interdisciplinary Scientific Committee focusing on rare diseases, requiring expertise and global collaboration.

011

Reposted by Rare Disease Clinical Trial Network

RTÉ News @news.rte.ie · 24/06/2026

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

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.

0176

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

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...

110

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 18/06/2026

002

Reposted by Rare Disease Clinical Trial Network

ERDERA @erdera.bsky.social · 11/06/2026

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

011

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 04/06/2026

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

rdi.ie

Rare Disease Patient Reported Experience Measure PREM

110

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 04/06/2026

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!

000

Reposted by Rare Disease Clinical Trial Network

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 03/06/2026

#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: go.eurordis.org/register-in

011

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

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....

000

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

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

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 20/05/2026

"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.

110

Reposted by Rare Disease Clinical Trial Network

ERDERA @erdera.bsky.social · 05/05/2026

💡 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: loom.ly/FWzBQpg #RareDiseases

021

Reposted by Rare Disease Clinical Trial Network

ERDERA @erdera.bsky.social · 06/05/2026

🎓 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: loom.ly/mFHgMVI #RareDiseases #ERDERA

011

Reposted by Rare Disease Clinical Trial Network

ERDERA @erdera.bsky.social · 14/05/2026

📣 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: loom.ly/eZk0EsA

011

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 15/05/2026

The TOPaZ trial, recently published in JAMA, represents the largest Randomized Controlled Trial (RCT) in Osteogenesis Imperfecta history. This landmark study includes Irish patients who took part to help learn more about this rare condition.

100

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

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

Reposted by Rare Disease Clinical Trial Network

Sally Ann Lynch @sorchainenil.bsky.social · 05/05/2026

Good news 🧪🧪🧬💊

011

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

Reposted by Rare Disease Clinical Trial Network

ERDERA @erdera.bsky.social · 14/04/2026

Patients are the glue holding the whole system together—without them, it simply wouldn’t exist. 👉 ERDERA speaks with Bojana Mirosavljevic, advocate behind Zoya’s Law in Serbia, on why patient voices must shape research & policy from day one. 🔗 Read more: loom.ly/vxcS4lo

011

Reposted by Rare Disease Clinical Trial Network

ERDERA @erdera.bsky.social · 15/04/2026

⏳ 2 weeks to go: Join Undiagnosed Day 2026 in Gdańsk! 🗓️ On 30 April 2026 we will bring together experts and stakeholders to explore approaches to phenotyping and diagnosis in undiagnosed conditions. 🔗 Discover the agenda and strong line-up of speakers, and register now: loom.ly/DbXzw0E

011

Reposted by Rare Disease Clinical Trial Network

ERDERA @erdera.bsky.social · 17/04/2026

📣 Two online courses are offering direct interaction with specialists in rare disease research. 📅 7 April–15 May: Health Data Ethics & Regulatory Frameworks 📅 27 April–12 June: From Lab to Clinic: Translational Research 🔗 Find out more and register: loom.ly/oPGm0FY #ERDERA

033

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

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 20/04/2026

One year ago, the community gathered together for our 2025 Conference. It was so powerful, we’re doing it again! ✨ SAVE THE DATE: 5th Nov 2026, O'Reilly Hall, UCD Take a trip down memory lane, and get ready for the next chapter:

youtube.com

Rare Disease Research Conference 2025 - Reflections

Stakeholder perspectives on the Rare Disease Research Conference held 10th April, 2025.

021

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

Reposted by Rare Disease Clinical Trial Network

All-Ireland Chromatin Consortium @aicc-ireland.bsky.social · 08/04/2026

Are you chromat-in or chromat-out? 🧬 Less than 2-weeks left to submit your abstract for this years @aicc-ireland.bsky.social symposium in @ucddublin.bsky.social ! We will be choosing talks & posters from these abstracts to present - with some fantastic prizes available. Registration link below 👇

053