EURORDIS-Rare Diseases Europe

The message from #ECRD2026 is clear: the momentum is here. Now it must be turned into action. From the Blueprint to calls for an EU Action Plan, discover the key discussions and takeaways from Europe's largest rare disease conference. 📖 Read more: go.eurordis.org/ecrd2026high...

Better access. Better support. Better outcomes. Key takeaways from this morning's #ECRD2026 parallel sessions 👇

#ECRD2026 opened this morning in Prague with a clear message: Europe has the knowledge, the momentum and the community needed to act. Now it needs coordination, political will and implementation. 👉 Stay tuned and join us online: https://go.eurordis.org/register-in

What comes next for rare disease policy in Europe? Today, ahead of #ECRD2026, the rare disease community came together in Prague to advance the European Blueprint for Rare Diseases and help define the priority actions needed by and for over 30 million Europeans.

🚨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

Debates, role-plays, and practicing protocols. Day 3 of the EURORDIS Open Academy X @erdera.bsky.social Schools has seen our participants putting their newfound knowledge to the test. 💭 We look forward to concluding both schools with a final session of joint presentations tomorrow morning!

From hospitals to genomic research centres, participants at the #EURORDISOpenAcademy x ERDERA Schools’ training week are experiencing rare disease #research and care in #action. 🏥 Stay tuned to follow their journey throughout the week!🚀 @erdera.bsky.social

🎧 For #EuropeanMentalHealthWeek, we’re highlighting a 10 Minutes With episode on mental health and rare diseases. Exploring isolation, uncertainty & the need for integrated support, it shows why mental wellbeing is essential to care. 🔗 Listen: https://go.eurordis.org/10MWytb

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

🎙️ Missed our latest #10MinutesWith? Now on YouTube 👇 Rhiannon Walls speaks with Allison Watson on advocating for ultra-rare conditions like Ring Chromosome 20 - from diagnostic challenges to the power of patient communities in influencing policy. ▶️ Watch now: https://go.eurordis.org/10MWepisode

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!

Today is #EuropeanPatientsRightsDay ✊ For people living with rare diseases, patients’ rights mean timely diagnosis, equitable access to care, and a real voice in decisions that affect their lives. Making this a reality requires coordinated #EU action:https://go.eurordis.org/eurordisblueprint

🚀 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

For Kostiantyn, #RareDiseaseDay’s message More Than You Can Imagine means more access. Living with a rare disease in Ukraine meant navigating not only his condition, but barriers to treatment and support. 🎥 Watch his story!

As #RareDiseaseDay approaches, Shum, a young advocate shares what More Than You Can Imagine means to him: Harmony. 🎶 Living with a rare disease, he sees the community like music - every person is a voice. And only together can we create true harmony. 🎥 Watch his story

✨ That’s a wrap on the 15th #EURPRDISAWARDS2026! Tonight in Brussels and online, we celebrated leaders driving change in the rare disease community. Congrats to all our awardees! 🎥 https://go.eurordis.org/BPA2026

#Europe is entering a new chapter in rare disease policy. Through the #EuropeanRegionalTaskForce, we aim to ensure the rare disease community has a clear and striking voice in shaping the European Blueprint for Rare Diseases. ⏳ Apply by 26 Feb: https://go.eurordis.org/regional-task-force

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