IRDiRC

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

[IRDiRC @irdirc]

📣 Call for Experts – Join IRDiRC’s Interdisciplinary Scientific Committee

✅policy/public affairs/human rights
✅education or capacity building

📩 Apply by 27 July 2026 [email protected]
👉🏼 More info: https://t.co/tcxbRloURk

#RareDiseases #IRDiRC #ISC

[IRDiRC @irdirc]

🌟 Patient Partnership Webinar Series 🌟

Join EURORDIS-Rare Diseases Europe for “Transition in Healthcare: Turning recommendations into practice” and explore how ERN recommendations can drive effective transition to adult care.

📅 30 June & 1 July
🔗https://t.co/H1lIIQM4Hb

[IRDiRC @irdirc]

Ahead of #NewbornScreeningDay (28 June), IRDiRC welcomes the WHO report on birth defects & newborn screening—a major step toward earlier diagnosis and better lives.

👉Learn more: https://t.co/DqatVetTdx

#RareDisease #NewbornScreening #IRDiRC #WHO

[IRDiRC @irdirc]

🌟 Welcoming 4 new members to the Regulatory Scientific Committee (RSC)!

Together, we’ll advance regulatory science, strengthen collaboration, and accelerate innovation for people living with rare diseases.

👉Learn more: https://t.co/7c5zygWQQV

#RegulatoryScience #IRDiRC

[IRDiRC @irdirc]

🌟 Highlights from #WODCUSA 2026 🇺🇸

IRDiRC was delighted to contribute to discussions advancing rare disease R&D through global collaboration.

Thank you to our constituent and task force members for their presentations and panel contributions. 👏

📸 Highlights below.

[IRDiRC @irdirc]

📢 Event Report Available!

🌍 The 2nd International Conference on Clinical Research Networks (#CRNs) united the global rare disease community to advance clinical research, with focus on LMICs.

Read the report & discover key insights!
https://t.co/uhw6ka7v9v

#RareDiseases

[IRDiRC @irdirc]

🎥 Earlier this year, members of IRDiRC’s 7 committees gathered in Sofia 🇧🇬 to advance collaboration in rare disease research.

Discussions focused on patient engagement, regulatory science, orphan drugs, emerging technologies & National Mirror Groups.

🎞️ https://t.co/cMDH6O0t7C

[IRDiRC @irdirc]

🌟IRDiRC is excited to join #WODCUSA 2026 in Boston!

From N-of-1 therapies to sustainable genetic medicine and bridging diagnostics to care, we're helping drive key conversations shaping the future of rare disease research.

See you there!

#RareDiseases #IRDiRC

[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]

📣 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]

🌟 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