IRDiRC

#IRDiRC is a consortium of #RareDisease #research funding agencies n stakeholders. RTs shares likes ≠ endorsement. Account managed by IRDiRC Scient. Secretariat

[IRDiRC @irdirc]

📣 Rare diseases affect 300–400M people globally, yet 95% lack treatments.

Our new publication calls for urgent global action and a Rare Disease Preparedness Roadmap inspired by COVID-19 lessons.

🖇️Read more: https://t.co/pkDsktlB0B

#RareDiseases

[IRDiRC @irdirc]

🚨 ERDERA Clinical Trial Call 2026 pre‑announcement is live

Planning to apply? Start preparing now 👉
https://t.co/WSqhbcSfzx

📅 Launch: 1 July 2026
🎓 Webinar (6 July): https://t.co/fyUKB3EXvy
🔁 Share with your network

#ERDERA #RareDiseases #ClinicalTrials

[IRDiRC @irdirc]

📣 Sign up for #RDSAConnect today!

Created by Rare Diseases South Africa, this patient-first registry helps ensure rare disease communities are seen, heard, and counted.

👉Join here: https://t.co/1WCJKvUDAy

#RareRegistry #RareDiseaseAwareness

[IRDiRC @irdirc]

🌟 Innovative financing models can help close gaps in rare disease diagnosis, treatment & care. Join the #RDI webinar on practical examples & global case studies.

🗓 18 June 2026 | ⏰ 14:00 CEST

👉https://t.co/NQyaHck5Yh

#RareDiseases #RDI

[IRDiRC @irdirc]

🚀 IRDiRC is joining #WODCUSA 2026 to drive conversations on N-of-1 therapies, sustainable genetic treatments, preventative medicines, and bridging diagnostics to care for rare diseases.

💡https://t.co/bofwzD3frC

[IRDiRC @irdirc]

🌟 Join the new EU4Health webinar series on paediatric & orphan devices! First session: “Planning development using the GAITS framework”.

📅 2 June | 17:00 CET. Free registration
👉https://t.co/b2k9zTuz0S

#OrphanDevices #EU4Health

[IRDiRC @irdirc]

#ECRD2026 is just around the corner! 🇪🇺🧬

Great to see multiple members of #IRDiRC confirming their onsite participation in Prague. 🤝

Looking forward to important discussions on rare disease policy, research, access to care, and collaboration across Europe and beyond.✨

[IRDiRC @irdirc]

📣 Join ERDERA’s Diagnostic Research Workstream webinar with Holm Graessner!

Learn how data sharing, advanced diagnostic pipelines & multi-omics innovation are accelerating rare disease diagnosis.

👉 Register: https://t.co/HioDY1pcLT

#RareDiseases #ERDERA

[IRDiRC @irdirc]

📣 Rare disease innovation must go beyond drugs 💡

Our latest publication explores how orphan medical devices & digital technologies can improve care for rare & pediatric populations 🌍👶🤝

🔗https://t.co/Fr3CIzQky1

#RareDiseases #MedTech

[IRDiRC @irdirc]

🌟 Registration is live for the Global Genes RARE Drug Development Symposium in Boston! 🇺🇸

Join leaders in research, policy, advocacy & clinical development to advance rare disease innovation and collaboration.

📩 Register here: https://t.co/LuarzgxjaX

#RareDisease

[IRDiRC @irdirc]

IRDiRC will join the EnprEMA & ACT EU workshop on paediatric clinical trials at the European Medicines Agency in Amsterdam on 12 May 2026.

Together, stakeholders will advance collaboration for innovative, patient-centred research for children.

🔗https://t.co/pHg6oSKT09

[IRDiRC @irdirc]

⏳ 6 days left to apply!

The IRDiRC TSC is looking for experts in rare diseases, digital health, modelling, and regulatory science. Don’t miss your chance to shape global collaboration.

📅 Deadline: 11 May 2026
📩 [email protected]
💡https://t.co/tcxbRloURk

[IRDiRC @irdirc]

🌟 Undiagnosed Day 2026 in Gdańsk 🇵🇱

IRDiRC was represented by Chair Dr. Dave Pearce and CCC Vice-Chair Shirlene Badger, joining global experts to advance diagnosis through collaboration.

🔗https://t.co/WIqvD8xZmk

#UndiagnosedDay2026 #RareDiseases #IRDiRC

[IRDiRC @irdirc]

📣 Global Nursing Education for Rare Diseases Position Paper Released

The GNNRD position paper outlines actions to strengthen nursing education & improve care worldwide.👩‍⚕️🩺🌍

👉 Read now: https://t.co/d4MeY3WQwA

#UndiagnosedDisease #Nurses #Education #GNNRD

[IRDiRC @irdirc]

📚 Three online courses to strengthen your knowledge of rare diseases🧬

The Foundation for Rare Diseases, with European and international partners, has launched three online courses on RDs.

Available on FutureLearn 👉 https://t.co/V4q291C65U

[IRDiRC @irdirc]

🌟 A European Parliament event on rare diseases, organised by @eurordis with MEP Nicolás González Casares, will take place on 23 April 2026 in Brussels and online.

👉More information: https://t.co/P8fWZ2FCKe

[IRDiRC @irdirc]

IRDiRC Therapies Scientific Committee (TSC) is recruiting new members! 🌍

Experts in #RareDiseases, simulation & modelling, digital health, or regulatory science are encouraged to apply.

📅 Deadline: 11 May 2026
📩 [email protected]
💡https://t.co/tcxbRloURk

[IRDiRC @irdirc]

📣 New IRDiRC publication: “Translating multi-omics into healthcare”

🧬 Multi-omics + computational methods advance rare disease research & precision medicine, improving diagnostics & treatments.

🤝 Open access: https://t.co/D49BbqRKtb

[IRDiRC @irdirc]

📣 @GeneticAlliance shares milestones from the #iHope program!

9 new clinical sites + 1 lab joined the network, and Dr. Jennifer Troyer joins the team.

3,000+ children sequenced and 1,500+ reached diagnoses for rare disease families.

🔗https://t.co/o1hJ0JItCL

[IRDiRC @irdirc]

🚀 RARE Drug Development Symposium 2026
“Accelerating Rare Disease Progress: Aligning Advocates, Science & Industry”

🗓 Sept 9–11, 2026
📍 Boston, MA, USA

Join advocates, scientists & industry leaders to accelerate rare disease research.

🔗https://t.co/LuarzgxjaX