European Haemophilia Consortium
@ehc-news.bsky.social
European Haemophilia Consortium (EHC) aims to improve the quality of life of people with haemophilia and other rare bleeding disorders throughout Europe.
https://www.ehc.eu/
https://www.ehc.eu/
🗣️EHC President Miguel Crato reflects on 2025: a year of strengthening our foundations & ensuring equitable access to treatments for ALL patients with #BleedingDisorders across Europe. Thank you to our NMOs, partners & volunteers! ❤️ buff.ly/bhFzozG
December 24, 2025 at 9:00 AM
🗣️EHC President Miguel Crato reflects on 2025: a year of strengthening our foundations & ensuring equitable access to treatments for ALL patients with #BleedingDisorders across Europe. Thank you to our NMOs, partners & volunteers! ❤️ buff.ly/bhFzozG
EHC issues a Statement on Severe Adverse Event in #Marstacimab #ClinicalTrial.
Read the statement: ehc.eu/news/stateme...
We will continue to follow developments and review any additional information shared by regulatory authorities and Pfizer as the investigation progresses.
Read the statement: ehc.eu/news/stateme...
We will continue to follow developments and review any additional information shared by regulatory authorities and Pfizer as the investigation progresses.
Statement on Severe Adverse Event in Marstacimab Clinical Trial • European Haemophilia Consortium (EHC)
ehc.eu
December 22, 2025 at 5:51 PM
EHC issues a Statement on Severe Adverse Event in #Marstacimab #ClinicalTrial.
Read the statement: ehc.eu/news/stateme...
We will continue to follow developments and review any additional information shared by regulatory authorities and Pfizer as the investigation progresses.
Read the statement: ehc.eu/news/stateme...
We will continue to follow developments and review any additional information shared by regulatory authorities and Pfizer as the investigation progresses.
🙏 Thank you to all our amazing volunteers who supported the European bleeding disorders community in 2025! Your dedication means everything. ❤️ #EHCommunity #VolunteerAppreciation #BleedingDisorders
December 22, 2025 at 10:53 AM
🙏 Thank you to all our amazing volunteers who supported the European bleeding disorders community in 2025! Your dedication means everything. ❤️ #EHCommunity #VolunteerAppreciation #BleedingDisorders
📖 "Eating Well and Staying Strong" is a practical nutrition guide for older adults with #BleedingDisorders, including a 7-day menu example. Created by EHC with expert geriatricians in the #LivingWellAgeingWell project. 🔗 Download it 👉 buff.ly/rpJiBPe
December 18, 2025 at 11:30 AM
📖 "Eating Well and Staying Strong" is a practical nutrition guide for older adults with #BleedingDisorders, including a 7-day menu example. Created by EHC with expert geriatricians in the #LivingWellAgeingWell project. 🔗 Download it 👉 buff.ly/rpJiBPe
🎥 New EHC Virtual Café Talk now available on @EHCTVChannel! In the context of our #LivingWellAgeingWell project, join Dr Birkan İlhan and Dr William McKeown for expert insights on #Nutrition and #HealthyAgeing for people with #BleedingDisorders 👇
Diet and Bone Health in Ageing
YouTube video by European Haemophilia Consortium
youtu.be
December 18, 2025 at 9:48 AM
🎥 New EHC Virtual Café Talk now available on @EHCTVChannel! In the context of our #LivingWellAgeingWell project, join Dr Birkan İlhan and Dr William McKeown for expert insights on #Nutrition and #HealthyAgeing for people with #BleedingDisorders 👇
🩸From plasma to personalised therapy with ultra-long half-life products—Explore 70+ years of innovation in #BleedingDisorder #ReplacementFactorTherapies on #EHCucate 👇
📚 History of Replacement Factor Therapies
📚 Principles of Factor Replacement
📚 Practical Foundations of RFT
🔗 buff.ly/p4xaQ8G
📚 History of Replacement Factor Therapies
📚 Principles of Factor Replacement
📚 Practical Foundations of RFT
🔗 buff.ly/p4xaQ8G
December 16, 2025 at 8:03 AM
🩸From plasma to personalised therapy with ultra-long half-life products—Explore 70+ years of innovation in #BleedingDisorder #ReplacementFactorTherapies on #EHCucate 👇
📚 History of Replacement Factor Therapies
📚 Principles of Factor Replacement
📚 Practical Foundations of RFT
🔗 buff.ly/p4xaQ8G
📚 History of Replacement Factor Therapies
📚 Principles of Factor Replacement
📚 Practical Foundations of RFT
🔗 buff.ly/p4xaQ8G
🚀 Don't miss our webinar programme in partnership with
@erneurobloodnet.bsky.social, which is part of "Living Well, Ageing Well", our year-long Ageing project! 🗓️ We start in January 2026 - Register now 👇
@erneurobloodnet.bsky.social, which is part of "Living Well, Ageing Well", our year-long Ageing project! 🗓️ We start in January 2026 - Register now 👇
🚀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/...
Register now for the full program! eurobloodnet.eu/education-2/...
December 15, 2025 at 2:08 PM
🚀 Don't miss our webinar programme in partnership with
@erneurobloodnet.bsky.social, which is part of "Living Well, Ageing Well", our year-long Ageing project! 🗓️ We start in January 2026 - Register now 👇
@erneurobloodnet.bsky.social, which is part of "Living Well, Ageing Well", our year-long Ageing project! 🗓️ We start in January 2026 - Register now 👇
🌟 Discover #ThisWay 2025 webinars on storytelling, joint health & art therapy—now with subtitles in 5 languages! Watch anytime for physical & mental well-being tips for the #BleedingDisorders community. 🎥 youtube.com/playlist?lis...
December 10, 2025 at 9:23 AM
🌟 Discover #ThisWay 2025 webinars on storytelling, joint health & art therapy—now with subtitles in 5 languages! Watch anytime for physical & mental well-being tips for the #BleedingDisorders community. 🎥 youtube.com/playlist?lis...
💚 On 5–7 Dec, we hosted #ERIN2025 in Berlin, uniting patients with #ExtremelyRare #BleedingDisorders & families. 🗣️ Sessions covered treatment updates, unmet needs & lived experiences. 🤝 Thanks to the ERIN Committee for their dedication! #EHCommunity
December 8, 2025 at 11:30 AM
💚 On 5–7 Dec, we hosted #ERIN2025 in Berlin, uniting patients with #ExtremelyRare #BleedingDisorders & families. 🗣️ Sessions covered treatment updates, unmet needs & lived experiences. 🤝 Thanks to the ERIN Committee for their dedication! #EHCommunity
📖 Knowledge should speak every language 🌍
"Is haemophilia (fe)male?", our Booklet on #WomenWithHaemophilia & Female Carriers, is now available on the #EHCAcademy in 7 languages! More coming soon, thanks to EHC National Member Organisations. ❤️
🔗 academy.ehc.eu/library/#WHD...
"Is haemophilia (fe)male?", our Booklet on #WomenWithHaemophilia & Female Carriers, is now available on the #EHCAcademy in 7 languages! More coming soon, thanks to EHC National Member Organisations. ❤️
🔗 academy.ehc.eu/library/#WHD...
December 4, 2025 at 11:00 AM
📖 Knowledge should speak every language 🌍
"Is haemophilia (fe)male?", our Booklet on #WomenWithHaemophilia & Female Carriers, is now available on the #EHCAcademy in 7 languages! More coming soon, thanks to EHC National Member Organisations. ❤️
🔗 academy.ehc.eu/library/#WHD...
"Is haemophilia (fe)male?", our Booklet on #WomenWithHaemophilia & Female Carriers, is now available on the #EHCAcademy in 7 languages! More coming soon, thanks to EHC National Member Organisations. ❤️
🔗 academy.ehc.eu/library/#WHD...
🇩🇪Hämophilie: eine Krankheit von Männern? Women are too often excluded from the #Haemophilia narrative. 📘🩸 Our EHC Booklet challenges misconceptions & calls for change. Discover it in German 🔗 buff.ly/hlzf8rr
#FrauenMitHämophilie #WomenWithBleedingDisorders #RareDiseases
#FrauenMitHämophilie #WomenWithBleedingDisorders #RareDiseases
December 4, 2025 at 9:00 AM
🇩🇪Hämophilie: eine Krankheit von Männern? Women are too often excluded from the #Haemophilia narrative. 📘🩸 Our EHC Booklet challenges misconceptions & calls for change. Discover it in German 🔗 buff.ly/hlzf8rr
#FrauenMitHämophilie #WomenWithBleedingDisorders #RareDiseases
#FrauenMitHämophilie #WomenWithBleedingDisorders #RareDiseases
🎥 #ERIN Webinar recording now live! Watch our panel discuss #BleedingDisorders of Unknown Cause (#BDUC), diagnostic testing, treatment & patient advocacy. Featuring experts & patient voices, in collaboration with @eahad.bsky.social.
Watch now 👇
youtu.be/vMbhTTBnxM8?...
Watch now 👇
youtu.be/vMbhTTBnxM8?...
ERIN Webinar on Bleeding Disorder of Unknown Cause (BDUC)
YouTube video by European Haemophilia Consortium
youtu.be
December 1, 2025 at 9:34 AM
🎥 #ERIN Webinar recording now live! Watch our panel discuss #BleedingDisorders of Unknown Cause (#BDUC), diagnostic testing, treatment & patient advocacy. Featuring experts & patient voices, in collaboration with @eahad.bsky.social.
Watch now 👇
youtu.be/vMbhTTBnxM8?...
Watch now 👇
youtu.be/vMbhTTBnxM8?...
🔬 @ema.europa.eu's PRAC committee issues new communication to healthcare professionals on injectable tranexamic acid medicines following their Oct 27-30 meeting. Important safety update for medical practitioners 👇
www.ema.europa.eu/en/news/meet...
#Pharmacovigilance #DrugSafety #EMA
www.ema.europa.eu/en/news/meet...
#Pharmacovigilance #DrugSafety #EMA
Meeting highlights from the Pharmacovigilance Risk Assessment Committee (PRAC) 27 - 30 October 2025 | European Medicines Agency (EMA)
PRAC agrees on a communication to healthcare professionals on injectable tranexamic acid medicines
www.ema.europa.eu
November 21, 2025 at 11:35 AM
🔬 @ema.europa.eu's PRAC committee issues new communication to healthcare professionals on injectable tranexamic acid medicines following their Oct 27-30 meeting. Important safety update for medical practitioners 👇
www.ema.europa.eu/en/news/meet...
#Pharmacovigilance #DrugSafety #EMA
www.ema.europa.eu/en/news/meet...
#Pharmacovigilance #DrugSafety #EMA
💪 Europe’s #BleedingDisorders community is #Ageing—and thriving! 🗣️ Join Miguel Crato, Olivia Romero Lux & William McKeown as they discuss our new project #LivingWellAgeingWell. 🎥 Watch our first Virtual Café Talk: youtu.be/BrdIsSzBPI0?...
November 20, 2025 at 9:00 AM
💪 Europe’s #BleedingDisorders community is #Ageing—and thriving! 🗣️ Join Miguel Crato, Olivia Romero Lux & William McKeown as they discuss our new project #LivingWellAgeingWell. 🎥 Watch our first Virtual Café Talk: youtu.be/BrdIsSzBPI0?...
EHC is pleased to participate in today's joint @ema.europa.eu Patients' and Consumers' Working Party/Healthcare Professionals' Working Party meeting. We value the opportunity to contribute to the #BleedingDisorders community’s perspective and continue strengthening collaboration.
#EMA
#EMA
November 18, 2025 at 10:33 AM
EHC is pleased to participate in today's joint @ema.europa.eu Patients' and Consumers' Working Party/Healthcare Professionals' Working Party meeting. We value the opportunity to contribute to the #BleedingDisorders community’s perspective and continue strengthening collaboration.
#EMA
#EMA
📣 It’s time for @ema.europa.eu to add #VonWillebrandFactor (VWF) to the EU #CriticalMedicines List! VWF is life-saving for patients with #VonWillebrandDisease, the most common inherited bleeding disorder. Read our full statement here 🔗
buff.ly/3egmFbB
buff.ly/3egmFbB
November 14, 2025 at 8:00 AM
📣 It’s time for @ema.europa.eu to add #VonWillebrandFactor (VWF) to the EU #CriticalMedicines List! VWF is life-saving for patients with #VonWillebrandDisease, the most common inherited bleeding disorder. Read our full statement here 🔗
buff.ly/3egmFbB
buff.ly/3egmFbB
💊 New booklet: “From laboratory to patients - How the safety of medicines is ensured in the European Union”
Published for #MedicineSafetyWeek — explore how EMA & EU countries work together to keep medicines safe and safeguard the health of patients.
👉 www.ema.europa.eu/en/about-us/...
Published for #MedicineSafetyWeek — explore how EMA & EU countries work together to keep medicines safe and safeguard the health of patients.
👉 www.ema.europa.eu/en/about-us/...
November 7, 2025 at 2:01 PM
🎓 The 2025 EHC #HealthEconomics Course wraps up with 100% positive ratings for the 3rd year running! Thank you to all participants for your dedication. You're now equipped to drive real change in HTA & access to treatments. See you in 2026! 🌍 #PatientAdvocacy
November 7, 2025 at 8:00 AM
🎓 The 2025 EHC #HealthEconomics Course wraps up with 100% positive ratings for the 3rd year running! Thank you to all participants for your dedication. You're now equipped to drive real change in HTA & access to treatments. See you in 2026! 🌍 #PatientAdvocacy
✅ Mission accomplished! The EHC delegation in #Slovenia visited healthcare facilities, exchanged knowledge & met with health authorities. 🇸🇮 Together, we’re building better care for all! 👇 community.ehc.eu/news/ehc-del...
#EHCommunity
#EHCommunity
EHC delegation visits Slovenia to strengthen bleeding disorders care • EHC Community
The EHC delegation visited Ljubljana, in Slovenia, on 3–4 November 2025 to learn more about national approaches to bleeding disorders care and to support joint efforts to enhance treatment, access,…
community.ehc.eu
November 5, 2025 at 1:30 PM
✅ Mission accomplished! The EHC delegation in #Slovenia visited healthcare facilities, exchanged knowledge & met with health authorities. 🇸🇮 Together, we’re building better care for all! 👇 community.ehc.eu/news/ehc-del...
#EHCommunity
#EHCommunity
📸 Relive the magic of #EHC2025! All the best moments from three unforgettable days in Vienna are now live on our Flickr. Download your favourites and share your memories with the #EHCommunity! 👉 flic.kr/s/aHBqjCz8fe
October 31, 2025 at 9:01 AM
📸 Relive the magic of #EHC2025! All the best moments from three unforgettable days in Vienna are now live on our Flickr. Download your favourites and share your memories with the #EHCommunity! 👉 flic.kr/s/aHBqjCz8fe
🇮🇹 Emofilia: una malattia di gene(re)? L'opuscolo EHC su donne con emofilia e portatrici è disponibile in italiano! 📘 Shining a light on misdiagnosis & need for change. Discover it 🔗 buff.ly/HOXU6yb
#DonneEmofilia #Haemophilia #WomenWithBleedingDisorders #RareDiseases
#DonneEmofilia #Haemophilia #WomenWithBleedingDisorders #RareDiseases
October 28, 2025 at 9:15 AM
🇮🇹 Emofilia: una malattia di gene(re)? L'opuscolo EHC su donne con emofilia e portatrici è disponibile in italiano! 📘 Shining a light on misdiagnosis & need for change. Discover it 🔗 buff.ly/HOXU6yb
#DonneEmofilia #Haemophilia #WomenWithBleedingDisorders #RareDiseases
#DonneEmofilia #Haemophilia #WomenWithBleedingDisorders #RareDiseases
📚 New EHC book "Emma and the Playhouse" helps kids with #VonWillebrandDisease explain their condition to friends & family. Written by Cathy Verbraeken, illustrated by Mariana Ostanik. Free download available! ➡️ buff.ly/FXhUvi6
#VWD #BleedingDisorders #RareDiseases
#VWD #BleedingDisorders #RareDiseases
October 24, 2025 at 8:10 AM
📚 New EHC book "Emma and the Playhouse" helps kids with #VonWillebrandDisease explain their condition to friends & family. Written by Cathy Verbraeken, illustrated by Mariana Ostanik. Free download available! ➡️ buff.ly/FXhUvi6
#VWD #BleedingDisorders #RareDiseases
#VWD #BleedingDisorders #RareDiseases
🧬 What if #BleedingDisorders could be cured, not just managed? The EHC's new booklet explores the promising world of #CRISPR technology — and what it could mean for patients. 📖 Download now: academy.ehc.eu/wp-content/u...
October 21, 2025 at 8:35 AM
🧬 What if #BleedingDisorders could be cured, not just managed? The EHC's new booklet explores the promising world of #CRISPR technology — and what it could mean for patients. 📖 Download now: academy.ehc.eu/wp-content/u...
🦷 Living with a bleeding disorder? Share your dental care experiences with the EHC. Your voice helps us support patients & raise awareness. 🗣 Anonymous option available: form.dragnsurvey.com/survey/r/b0e...
#BleedingDisorders #OralHealth
#BleedingDisorders #OralHealth
October 20, 2025 at 8:40 AM
🦷 Living with a bleeding disorder? Share your dental care experiences with the EHC. Your voice helps us support patients & raise awareness. 🗣 Anonymous option available: form.dragnsurvey.com/survey/r/b0e...
#BleedingDisorders #OralHealth
#BleedingDisorders #OralHealth
📣 People with #VonWillebrandDisease rely on #VonWillebrandFactor (VWF) to live safely — yet supply remains fragile. We urge National Competent Authorities to classify VWF as a #CriticalMedicine to protect patient access across Europe.
www.ehc.eu/news/ehc-urg...
www.ehc.eu/news/ehc-urg...
EHC urges EU to add von Willebrand Factor to Critical Medicines List • European Haemophilia Consortium (EHC)
EHC is calling on the European Medicines Agency to include von Willebrand Factor in the Union List of Critical Medicines, highlighting the urgent need to protect patients with von Willebrand Disease.
www.ehc.eu
October 16, 2025 at 3:00 PM
📣 People with #VonWillebrandDisease rely on #VonWillebrandFactor (VWF) to live safely — yet supply remains fragile. We urge National Competent Authorities to classify VWF as a #CriticalMedicine to protect patient access across Europe.
www.ehc.eu/news/ehc-urg...
www.ehc.eu/news/ehc-urg...