EURORDIS-Rare Diseases Europe
@eurordis
An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
ID:26993786
http://www.eurordis.org 27-03-2009 12:29:29
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We would like to thank Chiesi Group for their support of #ECRD2024 and their continued efforts in striving to co-create a brighter future for the rare disease community. 🤝 Chiesi Global Rare Diseases
See the full list and secure your space to join us! 👉 go.eurordis.org/hVPVPA
Discover the role of health data in rare disease research with EJP RD - European Joint Programme on Rare Diseases's online course!
Co-designed and taught by our Research Policy and Initiatives Director, Roseline Favresse, the programme is open to anyone wanting to learn more!
🎓 go.eurordis.org/szB6WI
Over 5,000 participants made their voices heard across Europe!
The #RareBarometer survey on the opinion of people living with a rare disease revealed that 70% of participants would have liked their condition to have been diagnosed at birth.
🔗 go.eurordis.org/BCvcLA
Positively styling life with Lymphoedema 💁
Tune in to the brand new episode of #EurordisRareOnAir in which host Julien Poulain speaks with Nicole Faccio, an inspiring social media advocate and winner of the 2023 EURORDIS Social Media Award. ✨
🎧 go.eurordis.org/Jeh4A0
Charting the Future 🗺️
With the EU elections fast approaching, we caught up with the EURORDIS Public Affairs Director, Valentina Bottarelli, to discuss the urgent need for an EU Action Plan for Rare Diseases. ⬇️ #ActRare2024
Read the full interview: go.eurordis.org/jpOql6
📣 Calling all members of the osteogenesis imperfecta (OI) and rare bone disease communities!
In collaboration with EURORDIS, REMEDi4ALL is hosting a meeting dedicated to amplifying the voice of patients in OI research.
🔗 Make your voice heard! go.eurordis.org/TuN0qG
Avril Daly, president and Virginie Bros-Facer, CEO at EURORDIS-Rare Diseases Europe discuss how we find ourselves at a pivotal juncture in the fight against rare diseases. With numerous elections in the offing, we stand before an opportunity to shape the future. bit.ly/WomenInRARE-Eu… #WomenInRARE
Enrol in the new #EURORDISOpenAcademy online course, 'Introduction to Genetics and Genomics”, in one simple click!
Dive into inheritance patterns, DNA structures, genetic testing and much, much more! 🔽
go.eurordis.org/OZjXg5