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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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Reposted by ERN EuroBloodNet
🚨 Registrations are OPEN for #ECRD2026
2026 marks a defining moment for rare disease policy in Europe. Five years after #Rare2030 and midway to the WHO 2028 target, #ECRD gathers the community to support the co-development of an EU Action Plan.
👉 Register now: https://www.rare-diseases.eu/register/
December 12, 2025 at 4:50 PM
Reposted by ERN EuroBloodNet
Join @erneurogen.bsky.social & ERNs across Europe for a crucial webinar:

🛠️ Medical Device Shortages & Regulatory Constraints
🗓️ Wed 21 Jan @ 18:00 CET
🎙️ With clinicians, regulators & industry experts
🔗 Register: events.zoom.us/ev/AvVY1AZbs...

#EUfunded #HealthUnion #RareDisease #ERNs
January 12, 2026 at 9:14 AM
📋​#New Publication! "HELIOS Action: Advancing research, education, and equity in hemoglobinopathies across Europe and beyond"

The article was recently published in HemaSphere Journal, the official open-access journal of the European Hematology Association (EHA).

eurobloodnet.eu/news/699/new...
New Publication:
eurobloodnet.eu
January 5, 2026 at 9:16 AM
📣​Registrations are open for #ECRD2026, taking place on 3–4 June 2026 in Prague and online. Join the rare disease community in discussions shaping future priorities for rare diseases in Europe.

📝​Secure your place with early-bird registration: eurobloodnet.eu/news/698/reg...

#ERNs #ERNeu
January 5, 2026 at 9:14 AM
📢​Register now for the first session of the "EHC-ERN-EuroBloodNet Topic on Focus: Ageing with a Bleeding Disorder"!

The program is coordinated by ERN-EuroBloodNet together with the umbrella patient organisation @EHC_Haemophilia

​📝​Registrations: bit.ly/4phwowL
December 29, 2025 at 3:17 PM
🌟​Happy holiday season & best wishes for 2026!

2025 has been a very active year for ERN-EuroBloodNet, with key achievements in education, clinical care, research, data and health policy across Europe. We’re proud of the collective work of our network.

eurobloodnet.eu/news/694/hap...
December 23, 2025 at 1:28 PM
Reposted by ERN EuroBloodNet
El trabajo, liderado por investigadores @sescs.bsky.social , sintetizó la evidencia científica disponible sobre los factores pronósticos en este tipo de linfoma con el objetivo de informar una guía de práctica clínica sobre el linfoma de #Burkitt impulsada por la red @erneurobloodnet.bsky.social.
December 16, 2025 at 3:41 PM
🚀​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