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.
✨ 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?...
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?...
Rare Disease Research Conference 2025 - Reflections
YouTube video by Rare Disease Clinical Trial Network
youtu.be
January 28, 2026 at 2:41 PM
✨ 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?...
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 https://loom.ly/axqoMwU 👇 #ERDERA #RareDisease #EUHealth
Watch the video https://loom.ly/axqoMwU 👇 #ERDERA #RareDisease #EUHealth
- YouTube
Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.
www.youtube.com
January 27, 2026 at 4:42 PM
💡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 https://loom.ly/axqoMwU 👇 #ERDERA #RareDisease #EUHealth
Watch the video https://loom.ly/axqoMwU 👇 #ERDERA #RareDisease #EUHealth
Reposted by Rare Disease Clinical Trial Network
📢 Save the Date — Mapping Rare: A World of Impact
In celebration of Rare Disease Day 2026, join us for a global event highlighting achievements from our global community! 🌍💜
🗓️ 17 February 2026
🕒 3–4pm CET
🔗 Learn more about Mapping Rare: lnkd.in/gCWyCBxE
📲 Register here: lnkd.in/db8HRPtj
In celebration of Rare Disease Day 2026, join us for a global event highlighting achievements from our global community! 🌍💜
🗓️ 17 February 2026
🕒 3–4pm CET
🔗 Learn more about Mapping Rare: lnkd.in/gCWyCBxE
📲 Register here: lnkd.in/db8HRPtj
January 27, 2026 at 11:12 AM
📢 Save the Date — Mapping Rare: A World of Impact
In celebration of Rare Disease Day 2026, join us for a global event highlighting achievements from our global community! 🌍💜
🗓️ 17 February 2026
🕒 3–4pm CET
🔗 Learn more about Mapping Rare: lnkd.in/gCWyCBxE
📲 Register here: lnkd.in/db8HRPtj
In celebration of Rare Disease Day 2026, join us for a global event highlighting achievements from our global community! 🌍💜
🗓️ 17 February 2026
🕒 3–4pm CET
🔗 Learn more about Mapping Rare: lnkd.in/gCWyCBxE
📲 Register here: lnkd.in/db8HRPtj
Reposted by Rare Disease Clinical Trial Network
RDI will be attending the 158th Session of the WHO Executive Board.
📣 We call on Member States to urge the WHO to:
🔹Move forward with the development of the Global Action Plan on Rare Diseases
🔹Provide clarity on timelines and the consultation process
📄 Read our Position Paper:
lnkd.in/dad_JY7t
📣 We call on Member States to urge the WHO to:
🔹Move forward with the development of the Global Action Plan on Rare Diseases
🔹Provide clarity on timelines and the consultation process
📄 Read our Position Paper:
lnkd.in/dad_JY7t
January 26, 2026 at 8:11 AM
RDI will be attending the 158th Session of the WHO Executive Board.
📣 We call on Member States to urge the WHO to:
🔹Move forward with the development of the Global Action Plan on Rare Diseases
🔹Provide clarity on timelines and the consultation process
📄 Read our Position Paper:
lnkd.in/dad_JY7t
📣 We call on Member States to urge the WHO to:
🔹Move forward with the development of the Global Action Plan on Rare Diseases
🔹Provide clarity on timelines and the consultation process
📄 Read our Position Paper:
lnkd.in/dad_JY7t
Reposted by Rare Disease Clinical Trial Network
📣 A new article is out in the Journal of Market Access & Health Policy as part of the Special Issue on #EUHTA.
Authored by our Treatment Access Team, it highlights why patients’ lived experience must be central throughout the EU HTA process.
👉: https://go.eurordis.org/HTAarticle
Authored by our Treatment Access Team, it highlights why patients’ lived experience must be central throughout the EU HTA process.
👉: https://go.eurordis.org/HTAarticle
January 18, 2026 at 8:00 AM
📣 A new article is out in the Journal of Market Access & Health Policy as part of the Special Issue on #EUHTA.
Authored by our Treatment Access Team, it highlights why patients’ lived experience must be central throughout the EU HTA process.
👉: https://go.eurordis.org/HTAarticle
Authored by our Treatment Access Team, it highlights why patients’ lived experience must be central throughout the EU HTA process.
👉: https://go.eurordis.org/HTAarticle
Reposted by Rare Disease Clinical Trial Network
Premiering at Sundance, reaching global audiences on Netflix, and receiving widespread critical acclaim, this year’s Black Pearl Award for Media & Awareness Raising goes to The Remarkable Life of Ibelin! #EURORDISAwards2026
🎥 Discover this remarkable story: https://go.eurordis.org/Awardees
🎥 Discover this remarkable story: https://go.eurordis.org/Awardees
January 20, 2026 at 4:15 PM
Premiering at Sundance, reaching global audiences on Netflix, and receiving widespread critical acclaim, this year’s Black Pearl Award for Media & Awareness Raising goes to The Remarkable Life of Ibelin! #EURORDISAwards2026
🎥 Discover this remarkable story: https://go.eurordis.org/Awardees
🎥 Discover this remarkable story: https://go.eurordis.org/Awardees
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: https://loom.ly/rJ5A7Ik
🔒 Strictly anonymous
🗓️ Open till 28 January 2026
👉 All the info: https://loom.ly/rJ5A7Ik
December 17, 2025 at 9:49 AM
🚀 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: https://loom.ly/rJ5A7Ik
🔒 Strictly anonymous
🗓️ Open till 28 January 2026
👉 All the info: https://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: https://loom.ly/kNumRPA
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: https://loom.ly/kNumRPA
January 12, 2026 at 12:15 PM
🌍 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: https://loom.ly/kNumRPA
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: https://loom.ly/kNumRPA
Reposted by Rare Disease Clinical Trial Network
Apply 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
🔗 https://loom.ly/scOFS9w
#ERDERA #ResearchFunding
🌍 Boosts inclusion of underrepresented countries
📅 Apply anytime – second deadline: 7 April 2026
🔗 https://loom.ly/scOFS9w
#ERDERA #ResearchFunding
January 15, 2026 at 8:33 AM
Apply 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
🔗 https://loom.ly/scOFS9w
#ERDERA #ResearchFunding
🌍 Boosts inclusion of underrepresented countries
📅 Apply anytime – second deadline: 7 April 2026
🔗 https://loom.ly/scOFS9w
#ERDERA #ResearchFunding
Reposted by Rare Disease Clinical Trial Network
The countdown to Rare Disease Day has started! Are you a Rare Disease Changemaker or do you know someone who is? 🌐
👉 Nominate the person you believe has made the greatest impact by filling out this short form: forms.office.com/pages/respon...
🚨 Deadline for nominations: 13 February 2026
👉 Nominate the person you believe has made the greatest impact by filling out this short form: forms.office.com/pages/respon...
🚨 Deadline for nominations: 13 February 2026
January 20, 2026 at 11:34 AM
The countdown to Rare Disease Day has started! Are you a Rare Disease Changemaker or do you know someone who is? 🌐
👉 Nominate the person you believe has made the greatest impact by filling out this short form: forms.office.com/pages/respon...
🚨 Deadline for nominations: 13 February 2026
👉 Nominate the person you believe has made the greatest impact by filling out this short form: forms.office.com/pages/respon...
🚨 Deadline for nominations: 13 February 2026
Reposted by Rare Disease Clinical Trial Network
Applications are now open for National Lottery Grants through the HSE. Community and voluntary organisations providing health and personal social services can apply for once-off funding between €300 and €10,000. Closing date: 12pm, 13 February 2026. For more information, see www.hse.ie/lotterygrants
January 21, 2026 at 4:33 PM
Applications are now open for National Lottery Grants through the HSE. Community and voluntary organisations providing health and personal social services can apply for once-off funding between €300 and €10,000. Closing date: 12pm, 13 February 2026. For more information, see www.hse.ie/lotterygrants
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...
📅 25 February
🕛 12pm–1pm
💻 Zoom
Register here: ucd-ie.zoom.us/webin...
January 21, 2026 at 2:35 PM
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...
📅 25 February
🕛 12pm–1pm
💻 Zoom
Register here: ucd-ie.zoom.us/webin...
Reposted by Rare Disease Clinical Trial Network
📢 Join RDI on 15 January 2026 from 13:30 - 14:45 CET for a public webinar where we will discuss the current status of the implementation of the WHA Resolution on Rare Diseases, as we approach the World Health Organization Executive Board meeting taking place in February 2026.
📲 lnkd.in/exF6U8z4
📲 lnkd.in/exF6U8z4
January 13, 2026 at 3:20 PM
📢 Join RDI on 15 January 2026 from 13:30 - 14:45 CET for a public webinar where we will discuss the current status of the implementation of the WHA Resolution on Rare Diseases, as we approach the World Health Organization Executive Board meeting taking place in February 2026.
📲 lnkd.in/exF6U8z4
📲 lnkd.in/exF6U8z4
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!
🚀 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: https://loom.ly/rJ5A7Ik
🔒 Strictly anonymous
🗓️ Open till 28 January 2026
👉 All the info: https://loom.ly/rJ5A7Ik
January 13, 2026 at 11:08 AM
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
🚀 Launching the IHI RealiseD Project: A New Era for Rare & Ultra-Rare Disease Research! 🌍
👩🏽🔬 With 40+ partners and a €17M budget, #RealiseD aims to accelerate treatments for over 30M people in Europe living with a #RareDisease, ensuring no patient is left behind! 🤝
🔗 Stay tuned! #IHI loom.ly/Kp7fkk8
👩🏽🔬 With 40+ partners and a €17M budget, #RealiseD aims to accelerate treatments for over 30M people in Europe living with a #RareDisease, ensuring no patient is left behind! 🤝
🔗 Stay tuned! #IHI loom.ly/Kp7fkk8
January 9, 2025 at 9:59 AM
🚀 Launching the IHI RealiseD Project: A New Era for Rare & Ultra-Rare Disease Research! 🌍
👩🏽🔬 With 40+ partners and a €17M budget, #RealiseD aims to accelerate treatments for over 30M people in Europe living with a #RareDisease, ensuring no patient is left behind! 🤝
🔗 Stay tuned! #IHI loom.ly/Kp7fkk8
👩🏽🔬 With 40+ partners and a €17M budget, #RealiseD aims to accelerate treatments for over 30M people in Europe living with a #RareDisease, ensuring no patient is left behind! 🤝
🔗 Stay tuned! #IHI loom.ly/Kp7fkk8
Reposted by Rare Disease Clinical Trial Network
Two weeks ago, the RealiseD project held a workshop in Amsterdam on playbooks to accelerate rare disease clinical trials. Collaborating across Europe, we’re building practical, patient-centred tools to strengthen trial readiness. Read more: 🔗 loom.ly/EXa9SHQ 🌟 #RareDiseases #RealiseD #clinicaltrials
RealiseD workshop recap: Defining scope & goals for the playbook - Realise D
On September 4, 2025, the RealiseD project brought together participants for a full-day workshop at Sanofi Nederland, Amsterdam, to define the scope, goals, and user focus of the forthcoming Playbook.
loom.ly
September 30, 2025 at 7:52 AM
Two weeks ago, the RealiseD project held a workshop in Amsterdam on playbooks to accelerate rare disease clinical trials. Collaborating across Europe, we’re building practical, patient-centred tools to strengthen trial readiness. Read more: 🔗 loom.ly/EXa9SHQ 🌟 #RareDiseases #RealiseD #clinicaltrials
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.