🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

ERN BOND is fostering clinical research collaborations! If you're a healthcare professional (HCP) working on rare skeletal disorders, this is your opportunity to contribute to groundbreaking studies. 🔗 Consult the list & submit your project here ec.europa.eu/eusurvey/publi…

🧬The latest ERN BOND newsletter is out! Stay connected with the rare disease community and get the latest updates from across the European Reference Network. Subscribe now!📩mailchi.mp/.../ern-bond-n… #ERNBOND #HealthUnion #EU4Health

What an incredible few days at EPOS 2025!👏Grateful for the opportunity to connect, share expertise, and contribute to one of the most important events in paediatric orthopaedics. #EPOS2025 #ERNBOND #EU4Health #HealthUnion

🔎 Call for Collaborators! Join a study on Acrodysostosis (OMIM #101800, #614613) to map clinical features & genotype links. Seeking cases with PRKAR1A/PDE4D variants. Share data & shape rare disease care. Details: ec.europa.eu/.../publicatio… #RareDisease #ERNBOND #Collaboration

💡From May 12 to July 4, join the facilitation period for the #EJPRD MOOC "Diagnosing Rare Diseases: From the Clinic to Research and Back" with expert support to guide your learning every step of the way. 🔗 Discover the course: futurelearn.com/courses/rare-g… #RareDiseases #EU4Health

🎉 The 52nd ECTS Congress kicks off today in Innsbruck! Running 23–26 May, it brings together experts in bone & calcified tissue science 🧠🦴 Wishing all attendees a great start to an exciting and impactful event. #ECTS2025 #BoneResearch #Innsbruck2025

📣 AISAC 2025 starts today in Rimini! Experts, families & advocates gather to discuss achondroplasia and short stature. 📍 Yes Hotel Touring | 🗓️ May 24–25 #AISAC2025 #Achondroplasia #RareDiseases #EU4Health #HealthUnion

🆕 New publication: Fully instrumented gait analysis in rare bone diseases. 🦴Gait data reveals key insights beyond imaging, like reduced step length & higher energy use. sciencedirect.com/science/articl… #RareBoneDiseases #GaitAnalysis #HealthUnion #EU4Health

ERN BOND Italia – Friday, June 6! Just 2 days to go until our national meeting. This is a key event for the Italian ERN BOND network to discuss ongoing activities and share updates. Stay tuned! #ERNBOND #ERNBONDItalia #RareDiseases #EU4Health

ERN BOND Italy – The Meeting Has Begun! This morning marked the official start of the ERN BOND Italia national meeting. We are excited to open the floor to rich discussions, updates, and collaboration around the ongoing activities of our network. #ERNBOND #ERNBONDItalia

🔎 Calling clinicians & researchers! Help explore the link between Maffucci syndrome (ORPHA:163634) & adrenal cortex tumors. Submit retrospective data by June 30, 2025. Let’s advance rare disease research together. 👉 ec.europa.eu/eusurvey/publi… #RareDisease #ERNBOND

The World Orphan Drug Congress Europe is the largest global event for orphan drugs & rare diseases, with 2,000+ attendees, 250+ leaders & 130+ exhibitors covering the full orphan drug lifecycle. 🎟️ ERN BOND members get a free VIP pass: secure.terrapinn.com/V5/sponsor-gue… #OrphanDrug

The European Registries have rebranded! 🚀 Now called EuRREB, with a new logo and redesigned site: eurreb.eu — Explore new features like study overviews & streamlined login. Goodbye EuRR-Bone, hello EuRREB! #RareDiseases #EuRREB #EU4Health

On June 18 in Rome, Motore Sanità hosted a key event on Alpha-Mannosidosis, newborn screening & rare disease care. Thanks to uniamomalattierare Annalisa Scopinaro, ERN BOND’s Luca Sangiorgi & all speakers. #RareDiseases #AlphaMannosidosis

🌍 Highlights from the Int’l Course on Skeletal Dysplasias, June 2025, Craiova 🇷🇴: ERN BOND was represented by Prof. Valerie Cormier Daire & Dr. Alice Moroni, who led a key session on rare bone disorders. #SkeletalDysplasias #ERNBOND #RareDiseases

Wonderful to join the 3rd ANDO Congress in Tomar! A great moment of exchange between ERN BOND members, ePAGs & the Coordination Team. Thanks to ANDO Portugal for the warm welcome and congrats on 10 years of commitment to the rare bone disease community! #EU4Health

How can rare disease research better involve patients? ERDERA has launched a new online survey to explore how rare disease patient organisations can contribute to publicly funded research. Take the survey: shorturl.at/ePVuL Learn more: shorturl.at/c03db

🎯 Save the Date: July 10–11, Rome 📍 NH Collection Roma Centro 🧬 uniamomalattierare presents the 11th #MonitoRare Report: The only patient-led rare disease monitor in Europe. 🗣️ Opening by President Annalisa Scopinaro #RareDiseases #MonitoRare2025 #EU4Health

🌍🧬 The latest ERN BOND newsletter is out! Stay connected with the rare disease community and get the latest updates from across the European Reference Network. Subscribe now! 📩 🔗 us20.campaign-archive.com/?u=4c025c84b71… #ERNBOND #HealthUnion #EU4Health

CPMS 2.0 Goes Mobile! We’re excited to share that the Clinical Patient Management System (CPMS) - the secure platform enabling cross-border discussion on rare and complex clinical cases - is now available as a mobile app on both the Android and Apple app stores!🎉 #CPMS #ERNs