Rare Disease Clinical Trial Network
@rarediseasectn.bsky.social
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.
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...
January 8, 2026 at 1:33 PM
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
Save the Date! 🌍
🇰🇪 RDI is thrilled to announce that the 2026 RDI Membership Meeting will take place in Nairobi, Kenya from 30 June to 2 July, 2026.
💡 Travel fellowships available! Applications close 1 March 2026.
👉 Check your inbox, register now and secure your spot.
🇰🇪 RDI is thrilled to announce that the 2026 RDI Membership Meeting will take place in Nairobi, Kenya from 30 June to 2 July, 2026.
💡 Travel fellowships available! Applications close 1 March 2026.
👉 Check your inbox, register now and secure your spot.
January 5, 2026 at 11:25 AM
Save the Date! 🌍
🇰🇪 RDI is thrilled to announce that the 2026 RDI Membership Meeting will take place in Nairobi, Kenya from 30 June to 2 July, 2026.
💡 Travel fellowships available! Applications close 1 March 2026.
👉 Check your inbox, register now and secure your spot.
🇰🇪 RDI is thrilled to announce that the 2026 RDI Membership Meeting will take place in Nairobi, Kenya from 30 June to 2 July, 2026.
💡 Travel fellowships available! Applications close 1 March 2026.
👉 Check your inbox, register now and secure your spot.
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.
January 2, 2026 at 10:31 AM
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
Join us at the 5th MENA Congress for Rare Diseases 2026! 🌍
This is your chance to connect with global leaders, share insights, and drive meaningful change for people living with rare diseases.
👉 Learn more and register here: www.menarare.com
This is your chance to connect with global leaders, share insights, and drive meaningful change for people living with rare diseases.
👉 Learn more and register here: www.menarare.com
December 17, 2025 at 9:14 AM
Join us at the 5th MENA Congress for Rare Diseases 2026! 🌍
This is your chance to connect with global leaders, share insights, and drive meaningful change for people living with rare diseases.
👉 Learn more and register here: www.menarare.com
This is your chance to connect with global leaders, share insights, and drive meaningful change for people living with rare diseases.
👉 Learn more and register here: www.menarare.com
Reposted by Rare Disease Clinical Trial Network
#research call! ILFA has received funding for a VPR pilot for #lungfibrosis patients in 2026. We need a #study partner-please share with anyone you think would be interested. Deadline for expressions of interest is 9th of January. More info: ilfa.ie/blog/urgent-... #ipf #ppf #ild #pulmonaryfibrosis
ilfa.ie
December 22, 2025 at 8:01 AM
#research call! ILFA has received funding for a VPR pilot for #lungfibrosis patients in 2026. We need a #study partner-please share with anyone you think would be interested. Deadline for expressions of interest is 9th of January. More info: ilfa.ie/blog/urgent-... #ipf #ppf #ild #pulmonaryfibrosis
Reposted by Rare Disease Clinical Trial Network
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
December 15, 2025 at 12:47 PM
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
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....
🔗 Full report: rarediseaseresearch....
December 18, 2025 at 12:56 PM
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....
🔗 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.
December 18, 2025 at 9:16 AM
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.
How a clinical trial changed my life
Linda Sheehan shares how her clinical trial journey began in 2022 with a bad chest infection and how her life changed.
www.healthnews.ie
December 15, 2025 at 5:02 PM
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
December 15, 2025 at 12:47 PM
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!
December 8, 2025 at 3:27 PM
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.
May 2025 Is it time to get serious about patient registries? -
At this Irish Health Research Forum, we'll delve into the critical role that different actors can play in fostering trust in health research.
hrci.ie
December 5, 2025 at 1:27 PM
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!
December 5, 2025 at 1:23 PM
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
Last week, REMEDi4ALL spoke to the TAR Network, joining 27 participants to discuss how resources can support repurposing initiatives.
☑️Highlights: concierge support, funding marketplace, value assessment tool, webinars, and policy/patient engagement.
👥More collaboration ahead!
☑️Highlights: concierge support, funding marketplace, value assessment tool, webinars, and policy/patient engagement.
👥More collaboration ahead!
December 4, 2025 at 8:01 AM
Last week, REMEDi4ALL spoke to the TAR Network, joining 27 participants to discuss how resources can support repurposing initiatives.
☑️Highlights: concierge support, funding marketplace, value assessment tool, webinars, and policy/patient engagement.
👥More collaboration ahead!
☑️Highlights: concierge support, funding marketplace, value assessment tool, webinars, and policy/patient engagement.
👥More collaboration ahead!
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 👉 https://loom.ly/kNumRPA #RareDisease #OprhanDrugs #ECRD #Research #PatientVoice
December 4, 2025 at 8:11 AM
📅 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 👉 https://loom.ly/kNumRPA #RareDisease #OprhanDrugs #ECRD #Research #PatientVoice
Reposted by Rare Disease Clinical Trial Network
📅🧣 Day 4 of #JARDIN's Advent Calendar
✨ ERN CRANIO is the ERN for rare craniofacial anomalies and ENT disorders. It brings together expertise across four groups: craniosynostosis and craniofacial anomalies, cleft lip and palate, orodental anomalies and ENT disorders.
🔗 https://www.ern-cranio.eu
✨ ERN CRANIO is the ERN for rare craniofacial anomalies and ENT disorders. It brings together expertise across four groups: craniosynostosis and craniofacial anomalies, cleft lip and palate, orodental anomalies and ENT disorders.
🔗 https://www.ern-cranio.eu
December 4, 2025 at 8:15 AM
📅🧣 Day 4 of #JARDIN's Advent Calendar
✨ ERN CRANIO is the ERN for rare craniofacial anomalies and ENT disorders. It brings together expertise across four groups: craniosynostosis and craniofacial anomalies, cleft lip and palate, orodental anomalies and ENT disorders.
🔗 https://www.ern-cranio.eu
✨ ERN CRANIO is the ERN for rare craniofacial anomalies and ENT disorders. It brings together expertise across four groups: craniosynostosis and craniofacial anomalies, cleft lip and palate, orodental anomalies and ENT disorders.
🔗 https://www.ern-cranio.eu
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!
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!
November 28, 2025 at 12:48 PM
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!
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!
Minister Carroll MacNeill has published recommendations designed to increase the number of clinical trials in Ireland, improve patient access and bolster Ireland's international standing in global clinical research. www.gov.ie/en/departmen...
November 27, 2025 at 9:42 AM
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
📢Calling academics and researchers!
Unlock Your Ideas: Join RTÉ Brainstorm Editor Jim Carroll to see how to get your work published! 🧠🔎
📆Wednesday, Dec 10, 2025 - 10:00 to 15:00
📍MU Library
Book your place: www.maynoothuniversity.ie/news-events/...
Unlock Your Ideas: Join RTÉ Brainstorm Editor Jim Carroll to see how to get your work published! 🧠🔎
📆Wednesday, Dec 10, 2025 - 10:00 to 15:00
📍MU Library
Book your place: www.maynoothuniversity.ie/news-events/...
November 26, 2025 at 2:38 PM
📢Calling academics and researchers!
Unlock Your Ideas: Join RTÉ Brainstorm Editor Jim Carroll to see how to get your work published! 🧠🔎
📆Wednesday, Dec 10, 2025 - 10:00 to 15:00
📍MU Library
Book your place: www.maynoothuniversity.ie/news-events/...
Unlock Your Ideas: Join RTÉ Brainstorm Editor Jim Carroll to see how to get your work published! 🧠🔎
📆Wednesday, Dec 10, 2025 - 10:00 to 15:00
📍MU Library
Book your place: www.maynoothuniversity.ie/news-events/...
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: https://lnkd.in/erMJCeGn
🔸Register to the webinar: https://loom.ly/d45a8o8
#ERDERA
ERDERA’s new call will focus on solving unsolved rare disease cases through variant validation and advanced technologies.
🔸Info: https://lnkd.in/erMJCeGn
🔸Register to the webinar: https://loom.ly/d45a8o8
#ERDERA
November 20, 2025 at 8:01 AM
📣 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: https://lnkd.in/erMJCeGn
🔸Register to the webinar: https://loom.ly/d45a8o8
#ERDERA
ERDERA’s new call will focus on solving unsolved rare disease cases through variant validation and advanced technologies.
🔸Info: https://lnkd.in/erMJCeGn
🔸Register to the webinar: https://loom.ly/d45a8o8
#ERDERA
Reposted by Rare Disease Clinical Trial Network
Final 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: https://loom.ly/1fhf8zI
#RareDiseases #ClinicalResearch
Join the global rare disease community this December, in Germany or online. 🌐
Co-organised by ERDERA, RDI and IRDiRC.
✍🏼 Programme & registration: https://loom.ly/1fhf8zI
#RareDiseases #ClinicalResearch
2nd International Conference on Clinical Research Networks: Connected for impact - ERDERA
ERDERA – the European Rare Diseases Research Alliance – is pleased to announce the upcoming 2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases, co-organised in collaboration with …
erdera.org
November 25, 2025 at 8:55 AM
Final 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: https://loom.ly/1fhf8zI
#RareDiseases #ClinicalResearch
Join the global rare disease community this December, in Germany or online. 🌐
Co-organised by ERDERA, RDI and IRDiRC.
✍🏼 Programme & registration: https://loom.ly/1fhf8zI
#RareDiseases #ClinicalResearch
Reposted by Rare Disease Clinical Trial Network
💻#webinar on “Guidelines on the Assessment and Treatment of Neurogenic Urinary and Sexual Symptoms”
📅25th November, 3 CET
🗣️A. Fanciulli and P. Guaraldi, Medical University Innsbruck and Azienda USL di Bologna
Sign up 👉 https://t1p.de/9cxi7
Joint with the @euronmd.bsky.social and @ean.org
📅25th November, 3 CET
🗣️A. Fanciulli and P. Guaraldi, Medical University Innsbruck and Azienda USL di Bologna
Sign up 👉 https://t1p.de/9cxi7
Joint with the @euronmd.bsky.social and @ean.org
November 24, 2025 at 9:01 AM
💻#webinar on “Guidelines on the Assessment and Treatment of Neurogenic Urinary and Sexual Symptoms”
📅25th November, 3 CET
🗣️A. Fanciulli and P. Guaraldi, Medical University Innsbruck and Azienda USL di Bologna
Sign up 👉 https://t1p.de/9cxi7
Joint with the @euronmd.bsky.social and @ean.org
📅25th November, 3 CET
🗣️A. Fanciulli and P. Guaraldi, Medical University Innsbruck and Azienda USL di Bologna
Sign up 👉 https://t1p.de/9cxi7
Joint with the @euronmd.bsky.social and @ean.org
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!
November 24, 2025 at 9:08 AM
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!
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!
November 21, 2025 at 3:31 PM
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!
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....
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....
November 20, 2025 at 11:17 AM
⏰ 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....
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....