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📢‼️Watch our video commemorating Rare Disease Day! showing the support of European Reference Networks, JARDIN and its participating countries for 28 February, World Day for Rare Diseases and Complex Conditions. youtu.be/ATdvk9SJg_M #RareDiseaseDay #EU4health #ERNs

Rare disease day in Pisa! ERN ReCONNET 🇪🇺 Rare Disease Day JARDIN Joint Action HaDEA EU One Health

Over a thousand #RareDiseaseDay events are happening worldwide!🎉One is Jazz4Rare in Poland—where improvisation, creativity & bravery define both this musical form & the rare disease community. Watch free👉 loom.ly/72qqLJc 🎷🌍 Info(PL/EN)👉 loom.ly/wrWXdQ0

‼️Do you work with health data collection, processing, or querying? Are you passionate about FAIR data, semantic modelling, or federated querying? 🚀Join JARDIN Online Hackathon on Health Data Federated Querying! Date: TBD (registration before 5 March!) ℹ️jardin-ern.eu/event/jardin-h…

🔹 We celebrate #RareDiseaseDay 🔹 More than 30 million people in Europe live with a rare disease. For them, accessing proper diagnosis & treatment can be a challenge. That’s where the ERNs step in! 🔹 Have you or someone you know benefited from ERNs? Share below! 👇

🗣️ Live Case Discussion 🗓️ March 11, 2025 | 15:00 CET 💡 Dr. María Mercadal-Hally (Vall d'Hebron, Barcelona) on “Liver involvement in Dyskeratosis Congenita. Do we transplant or not?” 📩 To attend, email us at [email protected] for the access link. See you there!

Official 🇪🇸 Rare Disease Day Event FEDER | Enfermedades Raras Oviedo (Spain) at the Auditorio Oviedo #RareDiseases #RareDiseaseDay Rare Disease Day

Today is the FEDER | Enfermedades Raras event to celebrate #RareDiseasesDay!🍀 📺 Follow it on Streaming!👇🏻

Gracias Juan Carrion Tudela por tu generoso y emocionante testimonio. Acto Oficial por el Día Mundial de las personas con Enfermedades Raras. FEDER | Enfermedades Raras Auditorio Oviedo @aytoviedo #pERsonas #HazVisible22q

Her Majesty Queen Letizia, who has been accompanying the FEDER | Enfermedades Raras family for more than 15 years, closes the Rare Disease Day event. She stressed the importance of improving the quality of life of people with #RareDiseases and their families. @aytoviedo FEDER | Enfermedades Raras Auditorio Oviedo

🚀ERN EuroBloodNet February Newsletter is out! 🚀 Check news on: 👉 #RareDiseaseDay 👉ERN at European Hematology Association 2025 Congress 👉ERN-EuroBloodNet Guidelines on Diagnosis and treatment of #BurkittLymphoma in adults 👉 JARDIN Joint Action Care Pathways Toolkit &More! eurobloodnet.eu/newsletter/but…

Our event at the European Parliament marking #RareDisease Day, 'Impact of Rare Diseases: More than you can imagine', has begun! Stay tuned for key contributions from the event!

"The rare disease community is three times more likely to experience unhappiness and depression than the general population," says advocate Adéla Odrihocká. "We really must rethink how we approach care & support. We need person-centred, lifelong & multidisciplinary care."

"Diagnosis of rare diseases remains a challenge," laments Enrique Terol, of the Permanent Representation of Spain to the EU. "On average it takes many years … but it’s completely unacceptable, this delay."

Many in the EU say "that nothing can change, and that the answers are not to be looked for in cooperation," says MEP Vlad Voiculescu, making the case for EU coordination on rare disease diagnoses. "We are all arguing for the opposite: the answer is in our cooperation."

Together - with multi-stakeholder collaboration WE CAN acheive our goals #Research Stine Bosse / Christine Adam Jarubas #RareDiseasesday HaDEA JARDIN Joint Action Retina International Rare Diseases Ireland RARE Ireland EURORDIS-Rare Diseases Europe HSE Ireland CancerTrialsIreland 🌈

Here we go! #RareDiseases #ERNs