EURORDIS-Rare Diseases Europe
@eurordis
🚀 Today marked the kick-off of the European Regional Task Force on Rare Diseases! This group will help shape a European Blueprint & contribute to the Global Action Plan. Learn more 👉 https://go.eurordis.org/regional-task-force
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Young advocates (12–21) are gathering in #Paris this week for the ERDERA Training at Institut Imagine Learning, sharing, and shaping the future of rare disease #research. 🎥 Hear what they wish others understood about rare diseases in the video below!
What happens when there is no diagnosis❓For millions, this is reality. ⏳ 5 years on average to diagnose a rare disease 🔍 44% consult 4+ healthcare professionals On #UndiagnosedDay, we stand with those still searching for answers. 🔗 https://go.eurordis.org/earlydiagnosis
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🚨The results are coming soon. And they tell an urgent story! 10,700+ people shared how rare & undiagnosed conditions impact mental health and wellbeing. Join us on 18 June as we unveil the latest #RareBarometer findings and discuss what must change. 👉 https://go.eurordis.org/RBresults
Our 6 FINALISTS are here… but who will win? 👀 🗳️ Voting for the #EURORDIS Photo Award 2026 is officially OPEN! 🔗 Vote now & help us crown the winners on 24 Feb 2026: https://www.eurordis.org/black-pearl-awards/photo-award/EURORDIS
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