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ERN EuroBloodNet
@erneurobloodnet.bsky.social
46 followers 67 following 34 posts
ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases.
Funded by the European Union.
Posts Replies Media Videos
erneurobloodnet.bsky.social
🚀​New educational program for patients and their families! ERN-EuroBloodNet, in collaboration with the @EHC_Haemophilia , is launching a new #webinar series dedicated to patients with bleeding disorders and their families.

​​Register now for the full program! eurobloodnet.eu/education-2/...
December 15, 2025 at 1:42 PM
erneurobloodnet.bsky.social
🚀​Register now for the 3rd session of the ERN-EuroBloodNet Topic on Focus on Inherited Platelet Function Disorders!

​​​🗣️​Speaker: Paolo Gresele
​​🕓​ 17/12/2025 at 17:00

ℹ️​More details and registrations: eurobloodnet.eu/education/to...

#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure
December 12, 2025 at 10:51 AM
erneurobloodnet.bsky.social
📤​Are you ready for the last webinars of 2025? The EDU Blood Academy Newsletter is out now!

Discover the webinars scheduled for December and stay up to date with the latest news. Subscribe to our Newsletter here: eurobloodnet.eu/edu-blood-ac...

#ERNeu #ERNs #HealthUnion
December 1, 2025 at 2:45 PM
erneurobloodnet.bsky.social
📢​Register now for the next edition of the ERN-EuroBloodNet Thursdays Webinar!

The #ThursdaysWebinars series is an accredited European online educational program, certified by EBAH.​

🎙️Speaker: Olivier Hermine
👉Don’t miss it, secure your spot today! eurobloodnet.eu/education/th...
December 1, 2025 at 11:23 AM
erneurobloodnet.bsky.social
📢 Join us for the 2nd Session of the EDITSCD & ERN-EuroBloodNet webinar series!

We are pleased to announce the second webinar of the program “EDITSCD & ERN-EuroBloodNet: Focus on Genetic Therapy for People Living with Sickle Cell Disease.”

👉Register now!
eurobloodnet.eu/education-2/...
November 14, 2025 at 9:45 AM
erneurobloodnet.bsky.social
🚨 Register now for the upcoming ERN-EuroBloodNet Thursdays Webinars!

The #ThursdaysWebinars are an accredited European online educational program, certified by the European Board for Accreditation in Hematology​

👉Don’t miss it, secure your spot today! eurobloodnet.eu/education/th...
November 5, 2025 at 10:50 AM
erneurobloodnet.bsky.social
📢​Not yet registered? Don't miss the next Thursday webinar in three days!

The #ThursdayWebinars are an accredited European online educational program, certified by the European Board for Accreditation in Hematology (EBAH).

👉 Register here: lnkd.in/dFCJVT2R

#ERNeu #ERNs #hematology
October 27, 2025 at 9:24 AM
erneurobloodnet.bsky.social
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://bit.ly/4qk0npD
October 24, 2025 at 11:33 AM
erneurobloodnet.bsky.social
🌍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: eurobloodnet.eu/news/678/ern...

#ERNeu #ERNs #HealthUnion #EU4Health
October 24, 2025 at 11:30 AM
erneurobloodnet.bsky.social
✅ Day 1 | ERN-EuroBloodNet & @radeep.bsky.social – #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
October 3, 2025 at 8:28 AM
erneurobloodnet.bsky.social
​🚀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://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
September 22, 2025 at 9:34 AM
erneurobloodnet.bsky.social
🚀​Registration now open for the Full Program! Just 2 weeks to go before the ERN-EuroBloodNet Topic on Focus on Inherited Platelet Function Disorders begins!

🎯This accredited European online educational program is designed for healthcare professionals.

eurobloodnet.eu/education/to...
September 10, 2025 at 10:47 AM
erneurobloodnet.bsky.social
📣​Have you registered yet? Join us on 𝗠𝗼𝗻𝗱𝗮𝘆 𝘁𝗵𝗲 𝟭𝟱𝘁𝗵 𝗮𝘁 𝟱:𝟬𝟬 𝗣𝗠 for the ERN-EuroBloodNet Patients Webinar: Gene Therapy for Pyruvate Kinase Deficiency and Congenital Dyserythropoietic Anemia Type II.

📝​Register now! bit.ly/3IdP6G0

#ERNeu #ERNs #hematology #HealthUnion @ec.europa.eu
September 9, 2025 at 9:43 AM
erneurobloodnet.bsky.social
🌍​The World Orphan Drug Congress Europe is the largest global event for orphan drugs and rare diseases, attracting over 2,000 attendees, 250+ industry leaders, and 130+ exhibitors, discussing topics from the entire orphan drug lifecycle.

​📝​ secure.terrapinn.com/V5/step1.asp...

#WODC #RareDiseases
August 18, 2025 at 10:09 AM
erneurobloodnet.bsky.social
🎯​​Outcomes of the successful working days at the #EHA2025 Congress!​​

ERN-EuroBloodNet participated actively with:
📍A dedicated booth;
🎤Active participation in oral & poster sessions;
🤝The Board of Network (BoN) meeting.

eurobloodnet.eu/news/660/out...

@ec.europa.eu @euonehealth.bsky.social
August 14, 2025 at 11:35 AM
erneurobloodnet.bsky.social
🚨​Hiring alert! We are looking for an experienced, motivated and committed Scientific delivery coordinator to join our dynamic team at Vall d’Hebron Institute of Research, Barcelona!

​​✒️Apply now: jobs.vhir.org/jobs/5909298...

#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure
August 11, 2025 at 8:02 AM
erneurobloodnet.bsky.social
🗨️​How can rare disease research better involve patients?
#ERDERA has launched a new online survey to explore how rare disease patient organisations can contribute to publicly funded research.

📆Open until mid-July
🔐Confidential

​🔗​Take the survey: shorturl.at/c03db

#RareDisease
July 11, 2025 at 1:29 PM
erneurobloodnet.bsky.social
🌟During the #EHA2025 , ERN-EuroBloodNet held a highly productive meeting with European Patient Advocacy Groups (ePAGs).

👉https://eurobloodnet.eu/patientsadvocacy/epag/

@eurordis.bsky.social @ehc-news.bsky.social @pnhsupport.bsky.social @pnhglobalalliance.bsky.social @ulbruxelles.bsky.social
June 26, 2025 at 12:24 PM
erneurobloodnet.bsky.social
💻​Don't miss the ERN-EuroBloodNet #ThursdayWebinar session on "Gene therapy for Pyruvate Kinase Deficiency and Congenital Dyserythropoietic Anemia Type II”!

🗓️3rd July - 17:00h CEST.
👉Registrations: eurobloodnet.eu/education/th...

#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #hematology
June 25, 2025 at 12:37 PM
erneurobloodnet.bsky.social
🌍​🩸On #WorldSickleCellDay, ERN-EuroBloodNet is proud to highlight a major step forward in addressing one of the most vulnerable moments in the lives of young people living with #SCD: the transition from pediatric to adult care.

🔗 www.mhpgroup.com/wp-content/u...

#SickleCellDisease #SickleCell
June 19, 2025 at 11:48 AM
erneurobloodnet.bsky.social
📢 Mariangela Pellegrini joined the launch of the Charter for optimal transitions from pediatric to adult care in sickle cell disease, held alongside #EHA2025.

🎯This milestone event, the #SCD Transitions Policy Lab, brought together patient advocates, patients, and clinicians from across Europe
June 16, 2025 at 1:06 PM
erneurobloodnet.bsky.social
🔬 @mmanupe.bsky.social took the stage at the #EHA2025 Hematology-in-Focus Session with a compelling presentation on:

💻​“Emergence of rare anemias using extensive sequencing techniques”

#ERNs #ERNeu #RareDiseases #CrossBorderHealth #HealthUnion
June 16, 2025 at 1:03 PM
erneurobloodnet.bsky.social
📍Recap from #EHA2025 ! Great to see Mariangela Pellegrini, actively participating in the poster session.

📝She presented important work on:
“Establishing consensus on the key components of optimal transition from paediatric to adult care in sickle cell disease across Europe.”

#ERNs #HealthUnion
June 16, 2025 at 12:39 PM
erneurobloodnet.bsky.social
📍 On site at #EHA2025? Come visit us at Hall 4, Allianz MiCo - Milano Convention Centre !

Meet the team and explore how we're advancing care in rare hematological diseases and the latest outcomes of:

🔹 The RADeep Network registries
🔹 The SYNTHEMA project
🔹 The GenoMed4All project
June 14, 2025 at 11:40 AM
erneurobloodnet.bsky.social
🌟This morning at the #EHA2025 Patient Joint Symposium, Angelo Loris Brunetta, representing the Thalassaemia International Federation as an ePAG member of ERN-EuroBloodNet, chaired the panel and introduced the topic "Advancing Quality of Life as a Measurable Outcome in Clinical Trials."

#hematology
June 12, 2025 at 3:54 PM