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.
Funded by the European Union.
📢 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/...
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
📢 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/...
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/...
🚨 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...
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
🚨 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...
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...
📢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
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
📢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
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
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
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
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
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
🌍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
🗓 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
🌍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
🗓 Thursday, 6th November | 💻 Online
Take a look at the provisional agenda and register here: eurobloodnet.eu/news/678/ern...
#ERNeu #ERNs #HealthUnion #EU4Health
✅ 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
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
✅ 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
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
🚀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
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
🚀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
Make your voice heard and take the survey before 16 November!
🔗https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
🚀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...
🎯This accredited European online educational program is designed for healthcare professionals.
eurobloodnet.eu/education/to...
September 10, 2025 at 10:47 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...
🎯This accredited European online educational program is designed for healthcare professionals.
eurobloodnet.eu/education/to...
📣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
📝Register now! bit.ly/3IdP6G0
#ERNeu #ERNs #hematology #HealthUnion @ec.europa.eu
September 9, 2025 at 9:43 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
📝Register now! bit.ly/3IdP6G0
#ERNeu #ERNs #hematology #HealthUnion @ec.europa.eu
🌍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
📝 secure.terrapinn.com/V5/step1.asp...
#WODC #RareDiseases
August 18, 2025 at 10:09 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
📝 secure.terrapinn.com/V5/step1.asp...
#WODC #RareDiseases
🎯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
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
🎯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
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
🚨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
✒️Apply now: jobs.vhir.org/jobs/5909298...
#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure
August 11, 2025 at 8:02 AM
🚨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
✒️Apply now: jobs.vhir.org/jobs/5909298...
#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure
🗨️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
#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
🗨️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
#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
🌟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
👉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
🌟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
👉https://eurobloodnet.eu/patientsadvocacy/epag/
@eurordis.bsky.social @ehc-news.bsky.social @pnhsupport.bsky.social @pnhglobalalliance.bsky.social @ulbruxelles.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
🗓️3rd July - 17:00h CEST.
👉Registrations: eurobloodnet.eu/education/th...
#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #hematology
June 25, 2025 at 12:37 PM
💻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
🗓️3rd July - 17:00h CEST.
👉Registrations: eurobloodnet.eu/education/th...
#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #hematology
🌍🩸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
🔗 www.mhpgroup.com/wp-content/u...
#SickleCellDisease #SickleCell
June 19, 2025 at 11:48 AM
🌍🩸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
🔗 www.mhpgroup.com/wp-content/u...
#SickleCellDisease #SickleCell
📢 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
🎯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
🔬 @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
💻“Emergence of rare anemias using extensive sequencing techniques”
#ERNs #ERNeu #RareDiseases #CrossBorderHealth #HealthUnion
June 16, 2025 at 1:03 PM
🔬 @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
💻“Emergence of rare anemias using extensive sequencing techniques”
#ERNs #ERNeu #RareDiseases #CrossBorderHealth #HealthUnion
📍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
📝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
📍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
📝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
📍 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
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
📍 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
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
🌟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
#hematology
June 12, 2025 at 3:54 PM
🌟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
#hematology
📢 #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
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
June 12, 2025 at 11:35 AM
📢 #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
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
🌍 Last week, the ERN-EuroBloodNet participated in two key events shaping the future of rare and complex disease care across Europe.
✅ These meetings were crucial opportunities to share best practices, align on strategic goals, and reinforce collaboration among the European Reference Networks #ERNs
✅ These meetings were crucial opportunities to share best practices, align on strategic goals, and reinforce collaboration among the European Reference Networks #ERNs
May 26, 2025 at 1:15 PM
🌍 Last week, the ERN-EuroBloodNet participated in two key events shaping the future of rare and complex disease care across Europe.
✅ These meetings were crucial opportunities to share best practices, align on strategic goals, and reinforce collaboration among the European Reference Networks #ERNs
✅ These meetings were crucial opportunities to share best practices, align on strategic goals, and reinforce collaboration among the European Reference Networks #ERNs
💻Not yet registered for this week's session? Register now and join us for the #ThursdayWebinar session on "Indication of splenectomy”!
👩🏫Provided by Maria Domenica Cappellini
👉Registrations: eurobloodnet.eu/education/th...
#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #haematology
👩🏫Provided by Maria Domenica Cappellini
👉Registrations: eurobloodnet.eu/education/th...
#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #haematology
May 19, 2025 at 3:10 PM
💻Not yet registered for this week's session? Register now and join us for the #ThursdayWebinar session on "Indication of splenectomy”!
👩🏫Provided by Maria Domenica Cappellini
👉Registrations: eurobloodnet.eu/education/th...
#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #haematology
👩🏫Provided by Maria Domenica Cappellini
👉Registrations: eurobloodnet.eu/education/th...
#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #haematology