IRDiRC

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

[IRDiRC @irdirc]

IRDiRC was delighted to see its work on #Nof1 treatments highlighted by Annemieke Aartsma-Rus (LUMC) at the #ERDERA 3rd General Assembly Meeting in Coimbra🇵🇹.

🔗 https://t.co/FgKi1t4n0h

[IRDiRC @irdirc]

🌟 Build relationships that move your mission forward! @GlobalGenes & Termeer Institute launch Leadership Lab to empower rare disease advocacy leaders.

💡Learn more: https://t.co/FwYqKGjbNZ

#RareDisease #PatientAdvocacy

[IRDiRC @irdirc]

📣 New publication: Precompetitive collaboration can accelerate rare disease R&D by enabling data sharing, co-creating standards and tools, reducing duplication, and speeding innovation.

Discover key success factors and real-world examples. 🔗 https://t.co/NdN3XWezGk

[IRDiRC @irdirc]

🌍 IRDiRC welcomes Grace Andrews 🇱🇷 and Mohammed Harris 🇺🇸 to its Diagnostics Scientific Committee!

Together, they’ll help advance rare disease diagnosis, genomics, data sharing and shorten the diagnostic odyssey.

#IRDiRC #RareDisease

[IRDiRC @irdirc]

📣 New publication! How can young people with rare diseases become meaningful research partners?

An IRDiRC perspective offers practical guidance for developmentally appropriate, ethical engagement.

🔗https://t.co/QNUJsFOlqE

[IRDiRC @irdirc]

🌍 IRDiRC was present at Sanofi’s Rare Dialogues in Paris, bringing regional voices together to advance rare disease research and care.

🤝 Collaboration and patient voices are key to global progress.

#RareDiseases #IRDiRC #RareDialogues

[IRDiRC @irdirc]

📣 RDI Webinar: Innovative Financing for Rare Diseases.

Join the final webinar session, as experts explore how financing solutions can move from concept to implementation.

🗓️ 29 Sept | 14:00 CEST
👉https://t.co/Pw5SKcLYrR

[IRDiRC @irdirc]

📢 Final reminder! Poster Zone applications for #WODCEurope 2026 close Monday, 28 Sept. Showcase your research to the global rare disease community. 🧬

Apply: https://t.co/SpSOGhY03F

📍 Amsterdam | 26–28 Oct

[IRDiRC @irdirc]

🚀 Registrations are open for #REACTCongress2027!

Join the rare disease community in Budapest, 10–12 March 2027, for 3 days of science, collaboration & innovation.

🔗 https://t.co/PKms7yiDsq

#RareDiseases #RAREvolution #REACTcongress

[IRDiRC @irdirc]

🌟 Rare disease patient group leaders: make your voice heard!

Share your experience in @RareBeacon Rare Insights Study and help shape evidence that can support funding, impact and service delivery across the UK.

Take the survey by 19 October:
👉 https://t.co/Zr5KjND5XX

[IRDiRC @irdirc]

🌟 Welcome to IRDiRC’s new Interdisciplinary Scientific Committee members!

Elizabeth Hart 🇺🇸 (FDA) and Teguh Haryo Sasongko 🇲🇾 (IMU University) bring valuable expertise and global perspectives to rare disease research. 🤝

💡Learn more: https://t.co/YKZE1rCAdC

#IRDiRC

[IRDiRC @irdirc]

🔎 Rare Disease Day 2027 launches soon!

Join EURORDIS’ campaign webinars on 19 Oct (4pm CEST) or 20 Oct (9am CEST) to discover the concept, heroes & resources. 🌍

💡More information: https://t.co/cryzvWOf7w

#RareDiseaseDay2027

[IRDiRC @irdirc]

🎙️The SCGE Workshop will take place on 29 Sept 2026, exploring clinical delivery, regulation & payment models for individualized genome editing therapies.

Join the discussion on enabling sustainable patient access. 📩 Register now: https://t.co/HNtPc5KXnT

[IRDiRC @irdirc]

🌐 New event: EMA & HMA workshop on real-world data in Duchenne muscular dystrophy, 25 Sept 2026.

Shekhar Natarajan, Chair of IRDiRC’s Therapies Scientific Committee, will join stakeholders in person.

#DMD #RWD #RareDiseases

[IRDiRC @irdirc]

🌟 PETAL Consortium brings together 100+ investigators across 20+ international sites to advance research in peripheral T-cell lymphoma (PTCL), fostering collaboration, data sharing, and discovery to better understand PTCL. 🔬🌎

💡Learn more: https://t.co/dAMUNg9s0u

[IRDiRC @irdirc]

🌏 Expanding Rare Disease Care Across the Pilbara

Six months ago, the Rare Care Centre in Western Australia commenced its Pilbara Hub clinics, bringing cross-sector rare disease care coordination to communities up to 1,500 kilometres from Perth, Australia.📍

[IRDiRC @irdirc]

⭐ IRDiRC at World Orphan Drug Congress Europe 2026!

Join 1,800+ rare disease leaders in Amsterdam, 27–28 Oct. 🎟️ Early Bird: save 20% by 4 Sept: https://t.co/8omVANafOK

📣 Poster Zone applications are open!

#IRDiRC #WODC2026

[IRDiRC @irdirc]

🎙️ 10 Minutes With Rhiannon Walls: The Rare Patient Passport

Sarah Baker, CEO of @camraredisease, shares how this practical tool brings medical information together, reduces burden and supports person-centred care.

🎥https://t.co/ZTKkGOFLzy

[IRDiRC @irdirc]

🧬 AI + Biology + Patients = New hope for rare diseases

🚀 @biohub Rare As One Network is opening its 4th cycle this fall, empowering patient-led research and accelerating the path to better treatments.

💡Learn more: https://t.co/M0MKjaxr2u

#AI #RareDisease

[IRDiRC @irdirc]

🌟 Discover the Rare Awareness Rare Education (RARE) Portal—a trusted Australian resource for verified rare disease information, education & support, funded by the Australian Government.

💡Learn more: https://t.co/3I7bSpCaw9

#RareDiseases #RAREPortal