Rare Disease Clinical Trial Network

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!

On Rare Disease Day, we highlight our work in Osteogenesis Imperfecta (OI), a rare inherited condition causing fragile bones and recurrent fractures. Led by Prof Rachel Crowley. @ucdmedicine.bsky.social @ucddublin.bsky.social

#RareDiseaseDay #OI #BoneHealth #ClinicalResearch #clinicaltrials

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...

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

📍 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

Hear 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.

We'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!

Genomics in Context Awards - Research Funding | Wellcome These awards will support transdisciplinary teams to catalyse research discoveries at the intersection of genomics, humanities, social sciences and bioethics.

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

If you missed this fantastic webinar, it is now available to view at evidencesynthesisireland.ie/webinar/dr-d...

🌍 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

YouTube video by Rare Disease Clinical Trial Network Rare Disease Research Conference 2025 - Reflections

✨ 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?...

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube. - YouTube

💡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

🚀 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

🌍 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

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

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

Image of ad for National Lottery Grants. HSE logo in the image. Copy says The HSE has been allocated National Lottery funding for distribution, under the Respite Care Grant Scheme and the National Lottery Grant Scheme. The HSE invites community groups and voluntary organisations providing health and personal social services to apply for once-off funding for suitable projects. • Amounts available: €300 to €10,000. • Closing date: Friday 13 February 2026 at noon. For more information and how to apply, visit www.hse.ie/lotterygrants or call HSELive on 1800 700 700.

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

@hrci.bsky.social @hrbireland.bsky.social @ppi-ignite-net.bsky.social @diverseppi.bsky.social @erdera.bsky.social @eurordis.bsky.social