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erneurobloodnet.bsky.social
ERN EuroBloodNet
@erneurobloodnet.bsky.social
ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases.
Funded by the European Union.
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🚀​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
🚀​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
Reposted by ERN EuroBloodNet
📅❄️ Day 7 of #JARDIN's Advent Calendar

@erneurobloodnet.bsky.social improves care for rare and complex hematological diseases across Europe. It covers 450+ rare hematological disorders, uniting 90 members across 18 Member States, 7 affiliated partners in 6 MS and 11 ePAGs.

🔗https://eurobloodnet.eu
December 7, 2025 at 8:30 AM
📤​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
📢​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
Reposted by ERN EuroBloodNet
The 100-day countdown to #RareDiseaseDay begins!
Meet Mak, Linges, Micah, Ayça & Burak, our heroes showing what life is like for the 300M people living with a rare disease.

Full video 🎥 youtu.be/7J1oTfoIOGw

Let’s bring about equity in more ways than even we can imagine!

#ShareYourColours
November 20, 2025 at 8:00 AM
📢 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
Reposted by ERN EuroBloodNet
The European Reference Networks (#ERNs) connect experts across Europe so people living with #RareDiseases can access the care they need.

24 ERNs help share knowledge, improve diagnosis & treatment, and strengthen healthcare systems.

Learn more jardin-ern.eu/european-ref...

#EU4Health #HealthUnion
November 6, 2025 at 11:25 AM
Reposted by ERN EuroBloodNet
The wait is over! Abstracts selected for #ASH25 are now live: https://ow.ly/h53J50XlPNr

Congrats to all presenters! Don't miss these presentations in person or virtually — register now! #HemeSky #MedSky
November 3, 2025 at 3:30 PM
Reposted by ERN EuroBloodNet
Two productive days in San Sebastian for the #SYNTHEMA consortium have come to an end. Lively discussions, clear goals for the final year: a recap publication on synthetic data in haematology, joint training with @erneurobloodnet.bsky.social, new papers, and the SYNTHEMA platform launch

synthema.eu
November 6, 2025 at 10:00 AM
🚨 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
🎧Discover the latest episode of the European Hematology Association (EHA) Unplugged podcast, “Point-of-care Tests for Neonatal Screening of Sickle Cell Disease”, featuring Prof. Gulbis Béatrice, Co-Coordinator of ERN-EuroBloodNet.

🎙️Listen to the full episode here:
www.youtube.com/watch?v=OwIe...
Point-of-care Tests for Neonatal Screening of Sickle Cell Disease (with Prof Béatrice Gulbis)
YouTube video by European Hematology Association
www.youtube.com
October 30, 2025 at 11:53 AM
Reposted by ERN EuroBloodNet
SYNTHEMA builds on strong ethical and collaborative foundations:

🩺 @erneurobloodnet.bsky.social – Europe’s rare haematology network

📊Contributions to ENROL, EU RD Platform, and
@radeep.bsky.social

🤝Partnership with Flower - open-source federated learning for privacy-preserving AI
October 28, 2025 at 10:25 AM
🎥New video! Building bridges for better transitions in Sickle Cell Disease

How can we ensure that young people living with rare diseases move safely from paediatric to adult care without losing access, confidence, or hope?

🎬Watch now: youtu.be/POEBC0YEMgM?...

#ERNs #ERNeu
The Charter for optimal care transitions from paediatric to adult care in sickle cell disease
YouTube video by ERN-EuroBloodNet's EDU
youtu.be
October 28, 2025 at 9:23 AM
📢​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
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
🌍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
Reposted by ERN EuroBloodNet
📣​#Hiring alert at @vhir.bsky.social !

Your role:
✅​Ensure smooth communication across teams and stakeholders;
✅​Oversee documentation and data management;
✅​Act as a bridge between the RADeep coordinating team, data providers, and external collaborators.

🔗 jobs.vhir.org/jobs/6487424...
September 26, 2025 at 9:42 AM
✅ 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
​🚀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
📢Are you involved in the care of patients with rare diseases? Your insights are crucial to improving continuity of care and shaping future strategies for rare disease patients across Europe!

👉 bit.ly/46JYtGW

#ERNeu #ERNs @ec.europa.eu @jardinjointaction.bsky.social @euonehealth.bsky.social
Europe-wide survey on transition and transfer procedures in rare diseases within the European Reference Networks (ERNs) | News | EuroBloodNet
The survey aims to understand how young patients with rare and complex conditions are transitioned from paediatric to adult care, and how care is transferred.
bit.ly
September 19, 2025 at 11:06 AM
🚀​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
💻​Don't miss this opportunity! ERDERA will mark its 1st anniversary with a stimulating free online event open to the entire rare disease community.

Register here: events.teams.microsoft.com/event/8a710c...
🚀 Be part of ERDERA’s 1st anniversary Open Session on 30 Oct! Hear inspiring voices in neurology, neurometabolic diseases & patient advocacy, and discover how #ERDERA is transforming rare disease research.
🔗 Find out more and register: https://loom.ly/6r3obgE
#RareDiseases
September 9, 2025 at 11:38 AM
📣​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
🌍​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