@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!
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...
@ucdresearch.bsky.social @ucddublin.bsky.social @svuh.bsky.social @eurordis.bsky.social @erdera.bsky.social
04.03.2026 11:26 — 👍 0 🔁 0 💬 0 📌 0It was a hugely productive and informative day, a union of specialised knowledge, energy, ambition and partnership. We look forward to continued collaboration and events. Thanks to the wonderful Faculty and to @gossamerbio.bsky.social for supporting this meeting through an educational grant.
04.03.2026 11:26 — 👍 0 🔁 0 💬 1 📌 0The multidisciplinary faculty included expertise in both specialties, translational science, clinical trial leadership and the patient perspective, to drive strategies for improved care and new therapies for people living with Pulmonary Hypertension and Interstitial Lung Disease.
04.03.2026 11:26 — 👍 1 🔁 0 💬 1 📌 0
A group of people standing facing the camera with two blue and purple screens behind them
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!
📢 Call for Abstracts Now Open
Submissions are open for the 3rd National Refugee & Migrant Health Seminar: Exploring the Social Determinants of Health at the University of Limerick.
More info & submit:
www.ul.ie/research/nat...
#RefugeeHealth #MigrantHealth
A new disabled persons’ organisation has launched in Dublin. The Dublin DPO aims to bring together voices from across coalitions – groups for the blind, the mobility impaired, the autistic, and more.
04.03.2026 09:40 — 👍 25 🔁 15 💬 0 📌 1
Thrilled to see a spotlight on our co-lead Dr Cormac McCarthy and the great work happening in ERN-Lung and
@svuh.bsky.social
Thrilled to see our co-lead Prof Rachel Crowley and the important work of our patient partners being highlighted - check out the video!
27.02.2026 11:39 — 👍 0 🔁 0 💬 0 📌 0
A stack of printed guides sitting on a blue background
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...
26.02.2026 09:12 — 👍 1 🔁 0 💬 0 📌 0
When disability isn't visible, often support isn't either. A big thank you to @paulmcauliffe.bsky.social for his support of the EB community to have access to much needed disability parking. You can find out more and add your support here debra.ie.
@darraghobrientd.bsky.social
🗣 Join the conversation tomorrow...
📍Where: Online (Zoom)
📅 When: Wed 25 Feb 2026
⏰️ Time: 12pm - 1pm
🔗 Register: ucd-ie.zoom.us/webinar/regi...
All doctors are encouraged to have their say in the formation of the next Medical Council by voting in the ongoing Elections which close on 26th February. To view a full list of candidates and their biographies, please visit our website. www.medicalcouncil.ie/elections
23.02.2026 10:51 — 👍 1 🔁 1 💬 0 📌 0
📍 Where: Online (Zoom)
🗓️ When: Feb 25th @ 12:00 PM
👉 Register: ucd-ie.zoom.us/webinar/regi...
Supported by @ppi-ignite-net.bsky.social @ UCD Seed Funding, inspired by the diverse rare disease community, and driven by a partnership between RDCTN and @hrci.bsky.social
19.02.2026 15:54 — 👍 1 🔁 0 💬 1 📌 0Hear from speakers about how to make research better for everyone. Join our panel @avrilkennan.bsky.social, @iamcharleneyoung.bsky.social, @cassandradinius.bsky.social and Chair Rachel Crowley for a walkthrough of the guide, shaped by lived experience and cross-sector expertise.
19.02.2026 15:54 — 👍 1 🔁 0 💬 1 📌 0We've been thinking, "How can we ensure that every voice is heard in health research, regardless of background?" Join our launch of a new Guide to EDI/Inclusion in PPI for some practical tips!
19.02.2026 15:54 — 👍 3 🔁 0 💬 1 📌 1
One month left to apply to our Genomics in Context Awards! ⏰
We’re funding new collaborations between genomics, the humanities, social sciences and wider society.
Awards up to £500,000 for up to two years.
Apply by 16 March: https://wellcome.org/research-funding/schemes/genomics-in-context-awards
Thrilled to see a project for Rare Disease care being funded - congrats to RaDiCare: A Digital Platform to Map, Guide and Coordinate Rare Disease Patient Care in Ireland! @dublincityuni.bsky.social
13.02.2026 10:17 — 👍 1 🔁 0 💬 0 📌 0If you missed this fantastic webinar, it is now available to view at evidencesynthesisireland.ie/webinar/dr-d...
12.02.2026 11:15 — 👍 1 🔁 1 💬 0 📌 0
🌍 What are national mirror groups & why do they matter in #RareDisease research? Victoria Hedley, Rare Disease Policy Manager at Newcastle Uni, explains their role in supporting collaboration & innovation 🎥 Watch the interview on YouTube to learn more: https://loom.ly/09gqMRM
#RareDiseases #ERDERA
Attending the ESI Summer School this May?
Limited on-campus accommodation is now available at Dunlin Village, just a short walk from the venue.
To book your place, go to: universityofgalway.clr.events/event/138868...
For more details, go to evidencesynthesisireland.ie/training/
The Wheel is recruiting its next CEO.
This is a key leadership role, offering a unique opportunity to provide executive leadership to a highly respected national organisation.
Closing date: 13 Feb 2026 at noon.
For details - https://www.principalconnections.com/job/chief-executive-officer-23461/
Register now for the 5th session of the "ERN-EuroBloodNet Topic in Focus: Inherited Platelet Function Disorders"!
🔗More info & registrations: eurobloodnet.eu/education/to...
#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure
✨ 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?...
💡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
📢 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
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
New Publication: How patients can contribute to the assessments of health technologies
📣 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
Eurordis Black Pearl Awards banner highlighting the Media & Awareness Raising Award for The Remarkable Life of Ibelin.
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
