🩸​June 19th is #WorldSickleCellDay, and @ERNEuroBloodNet & @RADeep_network are proud to launch a 2-minute animated video co-created with youth living with #SickleCell. 📺 YouTube playlist: https://t.co/XlJjhyLnre #SickleCellDisease #TransitionOfCare @mmanupe @MariangelaPell4

🌍Members, Affiliated Partners & Patient Organisations: Get ready for the 7th ERN-EuroBloodNet Progress Meeting! 🗓 Thursday, 6th November | 💻 Online Take a look at the provisional agenda and register here: https://t.co/mn4mamHdzQ #ERNeu #ERNs #HealthUnion #EU4Health

Presenting the Charter for Optimal Transitions in #SCD at the European Parliament​🌍​ A collective policy framework developed with clinicians, patients, and experts across Europe to strengthen continuity of care between pediatric and adult services. 🔗​ https://t.co/LHa09Tu1WV

⏳ Only one week to go until the 16th World Orphan Drug Congress Europe! 📅27–29 October 2025 📍RAI Congress Centre, Amsterdam Find out more: https://t.co/9J5V9rZVPL #ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #hematology #WorldOrphanDrugCongress

🚨 Register now for the upcoming ERN-EuroBloodNet Thursday Webinar! The #ThursdayWebinars are an accredited European online educational program, certified by the European Board for Accreditation in Hematology (EBAH).🌟​ 👉 Register here: https://t.co/97aiNyxu5E #ERNeu #ERNs

🌍 Re-released! Hear from rare disease accessibility experts as they share insights and solutions for creating a more inclusive world! 👉 Learn more about #Accessibility from our experts here: https://t.co/wLjog78luP @AniridiaNetUK #RareDiseaseDay #Inclusion

🗣️ Join the 11th #SickleCell conversation groups organized by @ASAFE with @EuroBloodNet! 💬 Topics: “The Body and the Image” (Oct 18) & “Social and Affective Relationships” (Oct 25). Led by psychologist Gabriela Medin. Let’s give voice to patients and families!

✅A productive and inspiring 3-day meeting of the ERN-EuroBloodNet team in Barcelona! Together at @VHIR_ , we aligned on upcoming deliverables, addressed future challenges, and defined strategies to further strengthen our network. 💙​Thanks to the ERN-EuroBloodNet team!

What are European Reference Networks (ERNs) and what is their role in the rare disease ecosystem?💡In ERDERA, ERNs are central to our mission, acting as gateways to clinicians and patients across Europe 👀

🗓️ La próxima sesión de Grupos de Conversación para adolescentes y jóvenes con enfermedad falciforme será el 18 de octubre a las 11:00 🕚 Escríbenos a 📧 asafefalciforme.info@gmail.com y te enviaremos el link para conectarte Más información en 👉

📣 Applications are open! #EURORDIS Open Academy applications open today for the Medicines R&D and Scientific Innovation Schools. 🎓 80 fully funded spots via #ERDERA 🧪 Hands-on sessions 🤝 Network with advocates & researchers 🔗 https://t.co/sj9tTwypLR #RareDiseases

🌍At #ASCAT2025, ERN-EuroBloodNet & @RADeep_network organised a 3 day patient educational programme focused on sexual health and #SCD. Together,these discussions represent a step forward in recognising sexual health as an integral part of comprehensive,patient-centred SCD care.

🌍Last week, the RADeep team was proud to attend the #ASCAT2025! 🤝​With the @ERNEuroBloodNet , we were present with a dedicated booth and, as part of the program, we were also proud to co-host the Patients Sessions: “Sexual Health Program for Patients with Sickle Cell Disease”

✅ Day 2 | ERN-EuroBloodNet & RADeep Network – #SCD Patients Session at #ASCAT2025 ! 𝗦𝗲𝘅𝘂𝗮𝗹 𝗛𝗲𝗮𝗹𝘁𝗵 𝗣𝗿𝗼𝗴𝗿𝗮𝗺 𝗳𝗼𝗿 𝗣𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝘄𝗶𝘁𝗵 𝗦𝗶𝗰𝗸𝗹𝗲 𝗖𝗲𝗹𝗹 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 🔹Today’s focus: Gender-Specific Sessions: Reproductive Health & Intimacy in SCD.

✅ Day 1 | ERN-EuroBloodNet & RADeep Network – #SCD Patients Session at #ASCAT2025 ! Sexual Health Program for Patients with Sickle Cell Disease 🔹Today’s focus: Understanding the impact of Sickle Cell Disease on Sexual Health #ERNs #hematology #RADeep #ERNeu #ASCAT2025

Through collaborations with @RADeep_network & @ERNEuroBloodNet, #SYNTHEMA aligns rare disease datasets with European standards. This ensures interoperability across registries and hospitals, strengthening the foundation for synthetic data and AI solutions in real-world healthcare

🚀​We are present at #ASCAT2025! ✅​This insightful event gathers the latest innovations in diagnosis, treatment, and emerging therapies for #SickleCellDisease and #Thalassaemia. Visit us in our joint booth with the RADeep Network team!

Do you want to get involved in advancing the future of rare disease research and innovation? Join the #EURORDISOpenAcademy School on Scientific Innovation & Translational Research. 📍 Barcelona | 25–28 May 2026 📅 Apply by 17 Oct 2025 👉 Learn more : https://t.co/ViU5fQCPO1

✅A successful and inspiring RADeep DAC Annual Meeting! 🌍​Last week, representatives from Italy, France, Spain, the Netherlands, Greece, Cyprus, Belgium, and Portugal gathered at @vallhebron for the annual #RADeep Data Access Committee (DAC) meeting. https://t.co/IHtEuAIGjn

🔔​Not registered yet? Only two days left for the next Thursday Webinar session! Register now to secure your spot!

🚀​@eurordis has recently launched a new global survey exploring what helps people live with a rare or undiagnosed condition, as well as their families. Make your voice heard and take the survey before 16 November! 🔗 https://t.co/eOVvIK3IAx