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.
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!
Also great to catch up with colleagues in @in4kids.bsky.social and Breakthrough Cancer Research!
November 17, 2025 at 8:43 AM
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!
Also great to catch up with colleagues in @in4kids.bsky.social and Breakthrough Cancer Research!
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!
November 12, 2025 at 1:32 PM
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!
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!
November 4, 2025 at 12:56 PM
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...
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...
November 3, 2025 at 12:39 PM
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...
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...
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!
October 30, 2025 at 9:41 AM
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!
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....
We're looking for pilot projects for new interventions & clinical trials.
⏰ Deadline is next month! Have you started your application yet?
Apply now: rarediseaseresearch....
October 16, 2025 at 11:55 AM
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....
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....
October 14, 2025 at 11:32 AM
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.
October 10, 2025 at 10:10 AM
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....
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....
October 3, 2025 at 11:04 AM
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....
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
October 2, 2025 at 11:42 AM
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
October 1, 2025 at 12:03 PM
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
Our own Sarah Forde presenting her work supporting research on Idiopathic Pulmonary Fibrosis (IPF), a rare lung disease, at #ERSCongress. A brilliant event to highlight ongoing research, innovation and discovery in improving lung health. Great representation of Irish RD research!
September 29, 2025 at 10:02 AM
Our own Sarah Forde presenting her work supporting research on Idiopathic Pulmonary Fibrosis (IPF), a rare lung disease, at #ERSCongress. A brilliant event to highlight ongoing research, innovation and discovery in improving lung health. Great representation of Irish RD research!
A huge welcome to Dr. Ilias Dimeas! A Respiratory Medicine Physician from Greece (Univ of Thessaly), Ilias explores how lung ultrasound can detect early signs of vasculitis. An exciting innovation in RD research! He joins RDCat as a Rare Disease Fellow at @svuh.bsky.social and Tallaght U Hospital.
September 24, 2025 at 12:03 PM
A huge welcome to Dr. Ilias Dimeas! A Respiratory Medicine Physician from Greece (Univ of Thessaly), Ilias explores how lung ultrasound can detect early signs of vasculitis. An exciting innovation in RD research! He joins RDCat as a Rare Disease Fellow at @svuh.bsky.social and Tallaght U Hospital.
RDCTN and RDCat teams met last week to review the National Rare Disease Strategy 2025-2030. We support fostering innovation to enhance diagnosis, treatment, and support for people living with rare diseases, and are encouraged by the focus on patient partnership and research.
September 22, 2025 at 2:36 PM
RDCTN and RDCat teams met last week to review the National Rare Disease Strategy 2025-2030. We support fostering innovation to enhance diagnosis, treatment, and support for people living with rare diseases, and are encouraged by the focus on patient partnership and research.
Our PPI Liaison Officer and a RDCTN PPI Partner were delighted to attend the HSE Patient & Public Partnership conference today. They presented a poster reflecting on the 'many hats' that PPI Partners wear, and how this enriches involvement and encourages an inclusive approach.
September 17, 2025 at 1:51 PM
Our PPI Liaison Officer and a RDCTN PPI Partner were delighted to attend the HSE Patient & Public Partnership conference today. They presented a poster reflecting on the 'many hats' that PPI Partners wear, and how this enriches involvement and encourages an inclusive approach.
An inspirational day at the 'I Am Number 17' book launch! RDCTN & RDCat teams were delighted to connect with the National Rare Diseases Office. Well done to all, especially the 17 extraordinary 'change makers' for sharing insights into what it's like to live with a rare disease.
September 12, 2025 at 10:44 AM
An inspirational day at the 'I Am Number 17' book launch! RDCTN & RDCat teams were delighted to connect with the National Rare Diseases Office. Well done to all, especially the 17 extraordinary 'change makers' for sharing insights into what it's like to live with a rare disease.
Great to see a strong Irish presence at ASBMR! ☘️
So proud to have Irish patients & consultants representing and highlighting the exciting clinical trials happening back home. This is huge for raising Ireland's profile on the world stage.
We're punching above our weight!
So proud to have Irish patients & consultants representing and highlighting the exciting clinical trials happening back home. This is huge for raising Ireland's profile on the world stage.
We're punching above our weight!
September 9, 2025 at 12:21 PM
Great to see a strong Irish presence at ASBMR! ☘️
So proud to have Irish patients & consultants representing and highlighting the exciting clinical trials happening back home. This is huge for raising Ireland's profile on the world stage.
We're punching above our weight!
So proud to have Irish patients & consultants representing and highlighting the exciting clinical trials happening back home. This is huge for raising Ireland's profile on the world stage.
We're punching above our weight!
Liz Molloy, Co-President of GACI Global and a PPI Partner with our network, presented research at ASBMR this weekend, titled Patient and Caregiver Insights on the Real-World Burden of the Rare Genetic Disorders, ENPP1 Deficiency and ABCC6 Deficiency. Well done to all involved!
September 8, 2025 at 2:02 PM
Liz Molloy, Co-President of GACI Global and a PPI Partner with our network, presented research at ASBMR this weekend, titled Patient and Caregiver Insights on the Real-World Burden of the Rare Genetic Disorders, ENPP1 Deficiency and ABCC6 Deficiency. Well done to all involved!
Our Co-Lead, Prof Rachel Crowley, is in Seattle for the American Society for Bone and Mineral Research (ASBMR) conference! She's sharing research, reconnecting with colleagues, and seeking out rare trials. With #WhiteSneakers on to support the campaign for musculoskeletal health!
September 5, 2025 at 11:18 AM
Our Co-Lead, Prof Rachel Crowley, is in Seattle for the American Society for Bone and Mineral Research (ASBMR) conference! She's sharing research, reconnecting with colleagues, and seeking out rare trials. With #WhiteSneakers on to support the campaign for musculoskeletal health!
Members of RDCTN and RDCat welcome the launch of Ireland’s new National Rare Disease Strategy. It is crucial step forward for research and treatment, and we support the plan to foster innovation to enhance diagnosis, treatment, and support for people living with rare diseases.
August 29, 2025 at 11:56 AM
Members of RDCTN and RDCat welcome the launch of Ireland’s new National Rare Disease Strategy. It is crucial step forward for research and treatment, and we support the plan to foster innovation to enhance diagnosis, treatment, and support for people living with rare diseases.
It was a privilege to celebrate the launch of Ireland’s new National Rare Disease Strategy today. This is a big step forward that will help improve the lives of people living with rare disease across the country. Thank you to everyone who contributed to this important work!
August 27, 2025 at 4:08 PM
It was a privilege to celebrate the launch of Ireland’s new National Rare Disease Strategy today. This is a big step forward that will help improve the lives of people living with rare disease across the country. Thank you to everyone who contributed to this important work!
We're thrilled to be recognized in the new National Rare Disease Strategy as an advance in rare disease research here in Ireland. This strategy is a massive step forward for the rare disease community and a clear commitment from the Department of Health. Bravo to all involved! 👏
August 27, 2025 at 3:56 PM
We're thrilled to be recognized in the new National Rare Disease Strategy as an advance in rare disease research here in Ireland. This strategy is a massive step forward for the rare disease community and a clear commitment from the Department of Health. Bravo to all involved! 👏
You're not seeing double, we're hiring for two posts! ✌️
Ready for a new adventure? We're also looking for a Rare Cardiology & Respiratory Registry Data Entry Manager at MMUH in Dublin.
Role: Grade V, Permanent Full-Time
Deadline: August 21, 2025
www.rezoomo.com/job/...
Ready for a new adventure? We're also looking for a Rare Cardiology & Respiratory Registry Data Entry Manager at MMUH in Dublin.
Role: Grade V, Permanent Full-Time
Deadline: August 21, 2025
www.rezoomo.com/job/...
August 12, 2025 at 12:09 PM
You're not seeing double, we're hiring for two posts! ✌️
Ready for a new adventure? We're also looking for a Rare Cardiology & Respiratory Registry Data Entry Manager at MMUH in Dublin.
Role: Grade V, Permanent Full-Time
Deadline: August 21, 2025
www.rezoomo.com/job/...
Ready for a new adventure? We're also looking for a Rare Cardiology & Respiratory Registry Data Entry Manager at MMUH in Dublin.
Role: Grade V, Permanent Full-Time
Deadline: August 21, 2025
www.rezoomo.com/job/...
We're on the lookout for a new coworker! 👀
Join the team at MMUH as a Rare Cardiology & Respiratory Registry Data Systems Manager, and help us improve care
Role: Grade V, Permanent Part-Time
Deadline: August 21, 2025
Apply now to make a difference! www.rezoomo.com/job/...
Join the team at MMUH as a Rare Cardiology & Respiratory Registry Data Systems Manager, and help us improve care
Role: Grade V, Permanent Part-Time
Deadline: August 21, 2025
Apply now to make a difference! www.rezoomo.com/job/...
August 12, 2025 at 11:58 AM
We're on the lookout for a new coworker! 👀
Join the team at MMUH as a Rare Cardiology & Respiratory Registry Data Systems Manager, and help us improve care
Role: Grade V, Permanent Part-Time
Deadline: August 21, 2025
Apply now to make a difference! www.rezoomo.com/job/...
Join the team at MMUH as a Rare Cardiology & Respiratory Registry Data Systems Manager, and help us improve care
Role: Grade V, Permanent Part-Time
Deadline: August 21, 2025
Apply now to make a difference! www.rezoomo.com/job/...
RDCTN were glad to connect with over 25 members of the Rare Disease Research Catalyst Consortium (RDCat) award at their Biannual Members Forum this morning. Thanks to those in-person and online for sharing updates and progress, and to RDCat for their partnership.
June 23, 2025 at 9:45 AM
RDCTN were glad to connect with over 25 members of the Rare Disease Research Catalyst Consortium (RDCat) award at their Biannual Members Forum this morning. Thanks to those in-person and online for sharing updates and progress, and to RDCat for their partnership.