European Haemophilia Consortium

It's #MedicineSafetyWeek!👇

🎓 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

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,…

✅ 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

📸 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

📚 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

🧬 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

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.

📣 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...

📣 Ageing with a bleeding disorder brings unique challenges. What worries you? 👉 Share your questions anonymously: buff.ly/LZl4src 🗣️ We'll address them throughout our new year-long project. Let's learn together! 🤝 #LivingWellAgeingWell

📣 On #WorldMentalHealthDay, make your voice heard! Our #EHCSurvey on #MentalHealth is open until 9 November. Available in 18 languages for people with #BleedingDisorders & caregivers. 🗣️ Your experience matters: buff.ly/sCrblPo

📣 On #WorldMentalHealthDay, we release our #EHCRoundTable Executive Summary on #MentalHealth in the #BleedingDisorders Community. Mental health IS healthcare. 📄 Read more: buff.ly/jpp4qrJ

Ageing is different for everyone. For people with bleeding disorders, it brings unique challenges. 💛 Join the EHC Living Well, Ageing Well project & share your story! 🔗 Ask anonymously: form.dragnsurvey.com/survey/r/a55...

#LivingWellAgeingWell #WorldGeriatricDay #HealthyAgeing

🌍 Today is #WorldGeriatricDay!

👥We’re launching “Living Well, Ageing Well” — our year-long project supporting people with #BleedingDisorders to live healthy, active lives at every age.

🔗 Learn more: www.ehc.eu/news/ehc-lau...

#LivingWellAgeingWell #HealthyAgeing

🎯 Powerful conversations today at our #EHCRoundTable! Experts & advocates tackled #MentalHealth stigma in #BleedingDisorders care. From EU policy to practical support: we're bridging the gaps together. 💪 Mental health IS healthcare! Read more here 🔗 www.ehc.eu/news/ehc-rou...

On #WorldPatientSafetyDay, we join the global call to put patients first.

At the ISTH, we know that advancing science is only meaningful when paired with a steadfast commitment to safety in care @who.int

Swipe through to hear directly from ISTH members on why patient safety matters.

🩸 Today is #WorldPatientSafetyDay! 🩸 #PatientSafety means ensuring no one is left without #CriticalMedicines. 📣 EHC calls for #VonWillebrandFactor to be added to the EU List of Critical Medicines. 🇪🇺 Read more: buff.ly/PZwEYnH

#WPSD2025

🇵🇱 Czy hemofilia ma płeć? Dostępne w języku polskim!

📘We’re proud to launch the Polish translation of our EHC Booklet on #WomenWithHaemophilia & Female Carriers—shining a light on misdiagnosis & need for change. Discover it here 🔗https://buff.ly/kLqNnX5

#KobietyZZaburzeniamikrwawienia

📣 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 🔗 buff.ly/PZwEYnH

💪 This #WorldPTDay, we celebrate how physiotherapy helps our #BleedingDisorders community stay strong and prevent falls as we age. Tailored exercise strengthens muscles, improves balance & builds bone density!

Learn more: world.physio

📄 #EHCThinkTank releases new paper on #BleedingDisorders registries! After 2+ years of workshops, they present solutions for fragmented data & poor collaboration: ✅ Better transparency ✅ Standardised collection ✅ Core EU dataset

Read it now 🔗 buff.ly/18DDr3W

#VonWillebrandDisease affects up to 1% of people but is often overlooked. Delays in #VonWillebrandFactor supply can be dangerous - healthcare systems must recognise VWF as a #CriticalMedicine.

@ema.europa.eu

#CriticalCare #BleedingDisorders

Without access to #VonWillebrandFactor (VWF), people with #VonWillebrandDisease face significant limitations preventing life-threatening bleeding. Healthcare systems must recognise VWF as #CriticalMedicine 📣

@ema.europa.eu

#CriticalCare #BleedingDisorders

📄 Issue Two of the EHC Novel Treatment Review 2025 is now available!

🩸 Latest developments in rare #BleedingDisorders treatments, including regulatory approvals & emerging therapies. Thanks to our NTR Working Group!

Read 👉 buff.ly/4ueN6Lx

#NovelTreatments

The recognition of #VonWillebrandFactor as a #CriticalMedicine is a decision based on evidence, equity and medical urgency.

@ema.europa.eu

#VonWillebrandDisease #CriticalCare #BleedingDisorders

It's time for health systems to recognise #VonWillebrandFactor as a #CriticalMedicine. We're not asking for privileges—we're asking for access to treatment that makes a difference for people with #VonWillebrandDisease. It's about equity and social justice. 🩸

@ema.europa.eu

Home - World Hepatitis Day Join the global fight against hepatitis on World Hepatitis Day, July 28. Learn how to raise awareness, take action, and help eliminate hepatitis worldwide.

📣 Together, we can eliminate viral hepatitis by 2030—but policy changes are essential.

On #WorldHepatitisDay, EHC urges policymakers to expand access to testing, care & vaccination.

👉 worldhepatitisday.org

#PolicyAction #HepatitisElimination

🌍 1M+ lives lost yearly to viral hepatitis, but early testing can change this trajectory.
🩸 EHC marks #WorldHepatitisDay recognising liver health for #BleedingDisorders.

📘 Read the @EASLnews Clinical Practice Guidelines on #HBV👉 buff.ly/TY4P0j6

🎈 Today is #WorldHepatitisDay 2025!

EHC stands alongside @who.int, @worldhepalliance.bsky.social, EASL & other European hepatology associations in marking this important day with the campaign “Let’s break it down”.

🌍 Take action. Get tested. End hepatitis stigma.

This recording is part of EHC's continued efforts following Rare Disease Day 2025 to highlight and address the needs of people living with extremely rare bleeding disorders. In this EHC European Rare and Inhibitor Network (ERIN) webinar, held in collaboration with EAHAD, we bring together patients and healthcare professionals to explore common challenges, share personal experiences, and discuss potential solutions. The session includes valuable perspectives from both the patient community and expert clinicians, fostering open dialogue and deeper understanding. Featured Speakers: Dr Saskia Schols, Internist-Haematologist, Radboud University Medical Centre, The Netherlands Helen Tate, Patient Representative Christina Vösl, Patient Representative Whether you're a healthcare provider, patient, caregiver, or advocate, we hope this conversation provides insight and encouragement for your work and journey. Thank you for being part of this important exchange. Webinar on Addressing the Needs of People with Extremely Rare Bleeding Disorders

🩸 New recording available from our June 2025 #ERIN Webinar on #ExtremelyRare #BleedingDisorders! Patients & healthcare professionals discuss challenges & solutions.🗣️ Dr Saskia Schols, Helen Tate & Christina Vösl

📺 Watch it now: www.youtube.com/watch?v=Pm0i...

w/ @eahad.bsky.social