🔔 Call for DSC members🧬👥. Are you a diagnostic lab scientist from North America, N/C Asia or Australasia? Join us to advance rare disease diagnosis!. 🗓️ Apply by 23 July 2025.📩 CV, biosketch & motivation letter ➡️ scientific.secretariat[at]

📢 Patient orgs, speak up! 🗣️. #ERDERA’s new survey explores how YOU can shape rare disease research. 🧩 Co-created with patient groups.🛠️ Help build meaningful involvement.🗓️ Deadline July 31.👉 Take it now: 🔎 Info: #RareDisease

🚨 Grant Alert! 🚨. FDA’s OOPD is funding innovative natural history studies in rare diseases to drive product development & fill knowledge gaps. 📅 Due: Feb 10, 2026.🔍 FOA: RFA-FD-25-017.📩 Contact: katherine.needleman@fda.hhs.gov.🔗 More:

🌟 Join the 2025 RARE Drug Development Symposium! 🌟. 📅 Sept 3–4, Boston, MA, USA.A hands-on, expert-led event empowering #RareDisease advocates to drive progress in drug development. 💊🔬. 👉 Learn more & register: @GlobalGenes #RareDrugDev25

🚨 Research Grant Opportunity!. The WSS Foundation & the Orphan Disease Center are offering 3⃣ two-year grants ($90K each) for #WiedemannSteinerSyndrome research:. 📅 LOIs due Aug 8, 2025.🔗 Apply now:

📢 Exciting news! Dr. Helen Malherbe is the new Vice Chair of the Interdisciplinary Scientific Committee (ISC)! 🌟. Her appointment brings valuable expertise and vision to the ISC, where she will help shape strategic direction. 🔗 #ISC #IRDiRC

📬NIH: Help shape the future of oligonucleotide therapeutics! NCATS seeks input on tools to predict toxicity beyond animal models. ⏳ Deadline: July 30, 2025.📩 ncatsoligotox@mail.nih.gov.🔗 #NCATS #toxicityprediction.

🔬 The IRDiRC Diagnostics Scientific Committee is recruiting 2 new members!. 🌍 Seeking diagnostic lab scientists from North America, North/Central Asia, or Australasia. 📅 Apply by 23 July 2025.📧 scientific.secretariat[at]🔗

🚀 ERDERA launches its Networking Support Scheme! 🌍. 🎯 Funding up to €30K/event for networking in rare diseases .🤝 Open to researchers, clinicians, advocates from 3+ ERDERA countries (1 underrepresented).📅 Deadline: 7 Oct 2025.🔗 More details:

🌟 New IRDiRC Newsletter published! 🌟. 🧬 Read the latest news in rare disease research, policy & more. 📩 Read now: 📲 Stay in the loop—subscribe here: #IRDiRC #newsletter #rarediseases

📣 Ongoing Call for New ISC Members! 👤. IRDiRC’s Interdisciplinary Scientific Committee is recruiting 3 new experts starting July 1, 2025. 🗓️ Apply by June 27, 2025.🧠 Commit to active participation in meetings & ISC work!.📬. #RareDiseases #IRDiRC

⭐ IRDiRC at #WODC Europe 2025! ⭐. We're excited to join the largest global event for #orphandrugs & #rarediseases 🌍. 📍 RAI Congress Centre, Amsterdam 🇳🇱.📅 Workshop: Oct 27 | Congress: Oct 28–29. Come visit our booth to learn more about #IRDiRC!. More details to follow soon!

📢 Exciting news! Saumya Jamuar (@SingHealthDuke) has been elected Vice Chair of the IRDiRC Diagnostics Scientific Committee! 🧬👏. A leader in rare genetic disorders, Saumya brings deep expertise to the role. Welcome aboard! 🌍💡. 🔗 #RareDisease #IRDiRC

⭐ New IRDiRC Publication: "From roadmap to a sustainable end-to-end individualized therapy pathway" ⭐. 🌍 Let’s make individualized therapies a standard, not an exception. 🔗 Read more: #RareDisease #Nof1 #PrecisionMedicine #IRDiRC

📢 Call for New Members: IRDiRC ISC! 🌍. We’re looking for experts in:.🔹 Ontologies/language learning.🔹 Pharmacy/pharmaceutical sciences.🔹 Health economics/HTA.🔹 Ethics. 🗓️ Apply by 27 June 2025.📩 scientific.secretariat[at]🔗

🚨 Major News from Geneva! 🚨. At #WHA78, WHO Member States adopted the 1st-ever Resolution on Rare Diseases — a huge win for 300M+ people worldwide. 🌍. 🤝 Let’s keep moving — together. 📰Read the resolution: #RareDiseases #HealthEquity #GlobalHealth

⭐ New Funding Models Toolbox now live! ⭐. Helping #RareDisease advocates understand funder roles, goals & strategies. 🔧 Toolbox: 📄 Companion paper: ℹ️ Task Force info: #RareDisease #Fundingstrategies

📣 New PACC Chair Announcement! 📣. We're thrilled to welcome Kelly du Plessis (RARE DISEASES INTERNATIONAL) as Chair of IRDiRC's Patient Advocacy Constituent Committee!. 🔗 Learn more: #RareDisease #PatientAdvocacy #IRDiRC

📢 On April 25, EMA's CHMP gave a positive opinion for givinostat (Duvyzat) — a novel HDAC inhibitor for ambulant #DMD patients (6+ yrs) with corticosteroids. Final EC decision expected by July 2025. A key step for the #RareDisease community. #Givinostat #EMA

📣 [NEW REPORT] A deep dive into the crucial role of industry in Public-Private Partnerships for #RareDiseases research! 🚀. 📘 A must-read to understand industry’s impact in successful PPPs. Read the full report: #PPP #RareDiseaseResearch #Innovation