Top Tweets for #ecrd
Hoy en la sesión de apertura de la #ecrd de @eurordis hemos escuchado a @javierpadillab Secretario de Estado de Sanidad hablar de acceso a innovación, sostenibilidad de las asociaciones de pacientes y enfermedades raras. Seguimos reivindicando #Huntington necesita recursos ya.
#ECRD is committed to accessibility & inclusion! All sessions will feature live captioning + AI translation in 60+ languages.
📱 In Prague: scan a QR code to follow in your language
💻 Online: access captions directly on screen
🔗 Learn more & register: https://t.co/qwZO2D2HZX
Why does #ECRD matter?
It brings patients, policymakers, clinicians and researchers together to shape rare disease policy in Europe.
Registration for ECRD 2026 is now open — join the discussion that drives real change.
👉 https://t.co/1b5FvrkpZg
The Eureka College men's basketball team made history this week, with a program-record six student-athletes named to the 2024-25 National Association of Basketball Coaches (NABC) Honors Court.
https://t.co/cGrkCtQaoI
L'abstract sur le Serious Game ADhoc présenté lors de la Conférence européenne sur les maladies rares (#ECRD) a été publié dans l'Orphanet Journal of Rare Diseases.
ADhoc est Serious Game lancé par SENSGENE sur l'annonce de diagnostic de maladie rare.
https://t.co/Z0HzGraMDr
The abstract dedicated to the Serious Game on how to announce a diagnosis of rare diseases and presented by ERN-EYE at the #ECRD earlier this year has been published in the @ojrarediseases.
Read it : https://t.co/dhVXYuf1v2
Play to the Serious Game : https://t.co/1LocPMbtkm
Please support Rare diseases by signing the Open Letter addressed to the European Commission! ❤️
https://t.co/ikbSsLGNTI
#ActRare2024 #openletter #raredisease #ECRD #rarediseases #LMNA
Υπογράψτε την Ανοιχτή Επιστολή που παρουσιάστηκε στο 12ο Ευρωπαϊκό Συνέδριο για τις #ΣπάνιεςΠαθήσεις και τστα #Ορφανά Προϊόντα (#ECRD 2024), η οποία περιγράφει τα κρίσιμα βήματα που πρέπει να γίνουν από την #ΕΕ για να αντιμετωπιστούν οι ανεκπλήρωτες ανάγκες των #ΣπάνιωνΑσθενών.
Have you signed yet? 🖋️
Over 600 people have already signed the #ECRD2024 Open Letter to the future leaders of Europe.
🔗 Sign now on behalf of yourself or your organisation: https://t.co/6Xjf4LRX4c
Congratulations @CarolineIberg & @ErnEyeEU team - awarded 1st prize for their poster at #ECRD a fantastic project! Well deserved 💚 @eurordis @Retina_Int @LHONrussell #raredisease
Náměstek @ZdravkoOnline Jakub Dvořáček vystoupil v závěrečném panelu #ECRD 2024 k tématu vzácných onemocnění, v rámci kterého uvítal revizi lékové legislativy 🇪🇺, zajištění bezpečných, kvalitních a účinných léčiv a podpořil společné nákupy léků pro vzácná onemocnění na úrovni 🇪🇺.
📩 Today at #ECRD, EUCOPE signed @eurordis open letter #ActRare2024.
🤝We are committed to enhance #health outcomes and quality of life of people living with #RareDiseases, driving far-reaching policies.
🔗Read and sign the Letter: https://t.co/EyLqucxYH5
🤩 @ern_reconnet is happy to take part to the #ECRD Conference organized by @eurordis that is being held these days!
💪 Our Network Manager, @DianaMarinello, is there for us!
💙 Excited to be there together with all the other #ERNs friends!
🌪️Stay tuned
🤝 @ern_reconnet is an associated partner of the #ECRD Conference organized by @eurordis May 15th-16th.
😃 Will you be join us?
❓Explore all the opportunities this event will provide you, by clicking here👉 https://t.co/y9epvxovkW
Look forward to meeting you there!
#ecrd 2024: meeting, debate and Exchange of good practices.
Looking to elevate your expertise, shape the future of rare diseases and network with the people making it happen? Attend #ECRD for all this and more!
Use the code: ECRD24_MediaPx_OnL153 for 15% off all online registration categories.
Register here:👇
https://t.co/FWtvoXYBuW
Looking to elevate your expertise, shape the future of rare diseases and network with the people making it happen? Attend #ECRD for all this and more!
Use the code: ECRD24_MediaPx_OnL153 for 15% off all online registration categories.
Register here:👇
https://t.co/FWtvoXYBuW
🤝 @ern_reconnet is an associated partner of the #ECRD Conference organized by @eurordis May 15th-16th.
😃 Will you be join us?
❓Explore all the opportunities this event will provide you, by clicking here👉 https://t.co/y9epvxovkW
Look forward to meeting you there!
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