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ERN EuroBloodNet

@erneurobloodnet.bsky.social

37 followers 40 following 23 posts

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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ERN EuroBloodNet @erneurobloodnet.bsky.social · Jun 19

🩸June 19th is #WorldSickleCellDay, and
ERN-EuroBloodNet & @radeep.bsky.social are proud to launch a 2-minute animated video co-created with youth living with #SickleCell.

📺 YouTube playlist: bit.ly/40dkz0P

#SickleCellDisease #WSCD25 #TransitionOfCare #PatientVoices #ERN @mmanupe.bsky.social

Transitioning from Pediatric to Adult Care with Sickle Cell Disease – Patients Story - YouTube

Transitioning from Pediatric to Adult Care with Sickle Cell Disease – Patients Story (Multilingual Versions). This video is available in this playlist with t...

bit.ly

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Reposted by ERN EuroBloodNet

RADeep Network @radeep.bsky.social · 13d

📣#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...

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ERN EuroBloodNet @erneurobloodnet.bsky.social · 6d

✅ 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

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ERN EuroBloodNet @erneurobloodnet.bsky.social · 17d

🚀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

ERN EuroBloodNet @erneurobloodnet.bsky.social · 20d

📢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

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ERN EuroBloodNet @erneurobloodnet.bsky.social · 29d

🚀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...

ERN EuroBloodNet @erneurobloodnet.bsky.social · Sep 9

💻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...

ERDERA @erdera.bsky.social · Sep 4

🚀 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

ERN EuroBloodNet @erneurobloodnet.bsky.social · Sep 9

📣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

ERN EuroBloodNet @erneurobloodnet.bsky.social · Aug 18

🌍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

ERN EuroBloodNet @erneurobloodnet.bsky.social · Aug 14

🎯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

Reposted by ERN EuroBloodNet

SYNTHEMA @synthemaeu.bsky.social · Jun 24

Sickle Cell Disease is rare in the EU (fewer than 5 in 10,000 people), but its prevalence is rising across Europe due to migration and shifting demographics. #SYNTHEMA uses privacy-preserving AI and synthetic data to advance diagnosis, research & treatment.

👉 synthema.eu

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Reposted by ERN EuroBloodNet

SYNTHEMA @synthemaeu.bsky.social · Jul 3

Last month, #SYNTHEMA and #GenoMed4All joined #EHA2025 in Milan to present our work on AI-powered federated platforms for data anonymisation & synthetic data. We also shared new insights on hydroxyurea treatment in SCD.

Read the recap: synthema.eu/2025/06/17/s...
#AIforHealth

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ERN EuroBloodNet @erneurobloodnet.bsky.social · Aug 11

🚨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

ERN EuroBloodNet @erneurobloodnet.bsky.social · Jul 11

🗨️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

ERN EuroBloodNet @erneurobloodnet.bsky.social · Jun 26

🌟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

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ERN EuroBloodNet @erneurobloodnet.bsky.social · Jun 25

💻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

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ERN EuroBloodNet @erneurobloodnet.bsky.social · Jun 19

🌍🩸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

Reposted by ERN EuroBloodNet

SYNTHEMA @synthemaeu.bsky.social · Jun 19

At #EHA2025, Sigrid van der Veen (UMC Utrecht) presented a #SYNTHEMA-linked poster on hydroxyurea therapy in SCD.

Key findings on metabolites & personalised treatment 👉 library.ehaweb.org/eha/2025/eha...

#SickleCell #Genomed4All

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ERN EuroBloodNet @erneurobloodnet.bsky.social · Jun 19

Transitioning from Pediatric to Adult Care with Sickle Cell Disease – Patients Story - YouTube

Transitioning from Pediatric to Adult Care with Sickle Cell Disease – Patients Story (Multilingual Versions). This video is available in this playlist with t...

bit.ly

1 3

ERN EuroBloodNet @erneurobloodnet.bsky.social · Jun 16

📢 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

ERN EuroBloodNet @erneurobloodnet.bsky.social · Jun 16

🔬 @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

ERN EuroBloodNet @erneurobloodnet.bsky.social · Jun 16

📍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

ERN EuroBloodNet @erneurobloodnet.bsky.social · Jun 14

📍 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

ERN EuroBloodNet @erneurobloodnet.bsky.social · Jun 12

🌟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

ERN EuroBloodNet @erneurobloodnet.bsky.social · Jun 12

📢 #EHA2025 We’re Here!

The biggest #hematology event in Europe is kicking off today in Milan, Italy and ERN-EuroBloodNet is proud to be actively participating!

📍On-site in Milan? Visit us at our booth at the Collaboration Plaza, Allianz MiCo - Milano Convention Centre.

#ERNeu #ERNs

Reposted by ERN EuroBloodNet

SYNTHEMA @synthemaeu.bsky.social · Jun 12

We’re at #EHA2025! Visit us in Hall 4 and meet the #SYNTHEMA & #GenoMed4All teams.

📢 Don’t miss the Clinical and Data-Driven Research session by @erneurobloodnet.bsky.social tomorrow, 13:00–14:30, with our project experts!

👉 Agenda: lnkd.in/ejt_znV5

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