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

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!

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#RareDisease#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👇 #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

📣 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

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#EURORDISAwards2026

🚀 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#RareDiseases#RareCancer#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

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...

📢 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

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!

🚀 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

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...

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.

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.

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

#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

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....

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.

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!

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!

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!

📅 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#ECRD#RareDisease #OprhanDrugs #ECRD #Research #PatientVoice

📅🧣 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

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!

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!

📢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/...

📣 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

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

💻#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