📣 Today is #WorldLiverDay! A crucial message for the #BleedingDisorders community: safe & highly effective treatments that can cure #HepatitisC in 95%+ of cases have been available since 2014.

💡Our #LivingWellAgeingWell project runs until October 2026 & there's already plenty to explore: webinars, podcasts, virtual café talks & guides on #HealthyAgeing with a #BleedingDisorder. 🔗 buff.ly/gNc3xhh #WHD2026 #WorldHaemophiliaDay

🩸 Marking #WHD2026, we’re proud to collaborate with @eupatientsforum.bsky.social on a special EU Patients #Podcast 🎙️ William McKeown reflects on the road to 2039: “Success isn’t just about reducing bleeding rates, but enabling full, independent lives.” Listen now👇 buff.ly/ZJ4DtOX

📣 Our community is ageing & that is progress worth protecting. 💌 On #WorldHaemophiliaDay, we are sealing a letter to the #BleedingDisorders community of 2039. It carries our voices, our hopes & a commitment: longer lives must mean better care. 🚀 Read more 👉 buff.ly/3QArvoF

🇷🇸 Da li je hemofilija samo muški poremećaj? We’re proud to share the Serbian translation of the EHC booklet on #WomenWithHaemophilia & Female Carriers, challenging misconceptions & calling for better diagnosis, care & recognition. 📖 Discover it 👉 buff.ly/nP8kWVD

📣 Too many patients with extremely rare bleeding disorders are still waiting for diagnosis, guidelines, treatment. On 17 March, we brought together patients, clinicians & policymakers to change that. 📄 Read our Round Table executive summary 👉 buff.ly/e6qZ9oH #BleedingDisorders #ERIN

🩸 #ExtremelyRare #BleedingDisorder of the Month: #BDUC. 🔎 No identified cause, yet the symptoms are real. Nosebleeds, bruising, heavy periods & more. ⚠️ Unknown ≠ imagined. 📣 Awareness matters. Learn more 👉 buff.ly/3ycei72

📣 On #WorldHealthDay, the EHC calls on EU policymakers to get the #EUBiotechAct right — with #Patients with #BleedingDisorders at the centre, real-world evidence & cross-border #ClinicalTrials. #StandWithScience 👉 buff.ly/rQxzkpz @who.int

🎥 Miss the @eurordis.bsky.social #Webinar on the 🇪🇺 #EU List of #CriticalMedicines? The recording is now available! #EHC CEO Olivia Romero Lux & Public Policy Lead Roberta Sadauskaite were among the speakers. 👇 ▶️ www.eurordis.org/webinar-unio... #RareDisease

❓#Ageing with #BleedingDisorders brings unique challenges. What worries you? Share your questions anonymously here 👉 buff.ly/15hLxQi

📄 Retiring with a #BleedingDisorder? We've got you covered. Download our new one-pager with practical tips on home adaptations, building routine & staying connected. Free to share! 👉 buff.ly/jBWMeGI #LivingWellAgeingWell #HealthyAgeing

🎥 How do you prepare for #Retirement with a #BleedingDisorder? Our new #LivingWellAgeingWell Virtual Café Talk covers home adaptations & maintaining independence — with Claire Forde, occupational therapist, & Dr William McKeown, geriatrician. Watch now👇 youtu.be/UfqSgrSwA-4?...

🎥 Missed our #InternationalWomenDay Webinar on #Fertility & Access to Care for #WomenWithBleedingDisorders? The recording is available on our @EHCTVChannel — watch it now & subscribe! ❤️ 🔗 youtu.be/Rwdm-WC9h40?... #IWD2026

EHC is attending the High-Level Conference on Patients’ Rights in Cross-Border Healthcare & European Reference Networks. For people with rare bleeding disorders, access to expert care across borders is essential. Let’s strengthen ERNs & ensure no one is left behind. #HealthUnion

📣 Behind every policy ask is a lived experience. 🦷 On #WorlOralHealthDay, EHC shares stories from people with #BleedingDisorders on #OralHealth challenges & what needs to change. 🔗 Read their voices: buff.ly/cKBCP2c #WOHD26 #WOHD2026

🦷On #WorldOralHealthDay, we call for better #OralHealth care for people with #BleedingDisorders, outlining priorities for accessible, coordinated dental care. 📣 Read more: buff.ly/3Ko3jxs @stinebosse.bsky.social #WOHD26 #WOHD2026

🎥 The recording of our #RareDiseaseDay 2026 #Webinar on #PlateletDisorders with @eahad.bsky.social is available on our @EHCTVChannel — patient stories & clinical insights in one session. ▶️ 🔔 Watch & subscribe: youtu.be/ycGuueLXBP0?...

The conversation is about to start! 🇪🇺 We're live at the #EHCRoundTable on Unmet Needs in #ExtremelyRare #BleedingDisorders in Brussels. Experts, policymakers & patient voices united around one goal: ensuring no one is overlooked. Follow this thread for live updates 👇🧵

🩸 #ExtremelyRare #BleedingDisorder of the Month: #FactorXDeficiency. 🔎 Often undiagnosed & causing lifelong unpredictable bleeding risks. 📣 Awareness saves lives. Learn more 👉 buff.ly/51eKT7M

✨ What do you hope for by 2039? 🚀 This #WHD2026, add your voice to our time capsule. 📩 Complete one sentence prompt: sealed on April 17, 2026, opened in 2039. 📣 Deadline: 18 March. 👉 buff.ly/flZuWMw #WorldHemophiliaDay #WorldHaemophiliaDay

🎥 Miss our first #ThisWay webinar of 2026? Clive Smith (President of The Haemophilia Society UK) became the first person to complete an Ironman with #Haemophilia & his story is one you won't want to miss. 👀 Watch "Strength in Motion" now 👉 youtu.be/2iNnqoDsnsA

❓#Ageing with #BleedingDisorders brings unique challenges. What worries you? Share your questions anonymously 👉 buff.ly/15hLxQi 🎯 We'll address them throughout our year-long project #LivingWellAgeingWell, check its resources: buff.ly/mB2IPh0

💜 These are real stories from women with #BleedingDisorders. 📣 This #IWD2026, we say: you can't treat what isn't diagnosed. 👉 Listen earlier. Test sooner. @eupatientsforum.bsky.social @eahad.bsky.social @eurordis.bsky.social

📣 On #IWD2026, we call for equitable recognition, diagnosis & care for women with #BleedingDisorders across Europe.🩸 Too many women wait years for a diagnosis. That must change. Read our full statement 👉 www.ehc.eu/awareness/in... @tillymetz.bsky.social @stinebosse.bsky.social

🎙️ Episode 1 on “Adapting Home and Life to Retirement” of our #PeerPioneerPodcast is live! Retirement, home adaptations & ageing well with a #BleedingDisorder. 🗣️ Guests: patient advocates Jim O’Leary & Yannick Collé 📣 Part of the EHC #LivingWellAgeingWell project 👉 buff.ly/nt9DEpS

🏃 From chronic pain with every step to moving every day. In this #ThisWay story, Nir shares how living with severe #Haemophilia A forced him to give up competitive tennis & how yoga helped him rebuild strength and rethink pain. 💬 “Gentle movement counts.” 🔗 Read his journey: buff.ly/oxGR0j0

🇪🇪 Hemofiilia: nais- või meessoo haigus? Women are too often excluded from the #Haemophilia narrative. 📘🩸 Our EHC Booklet challenges misconceptions & calls for change. Discover it in Estonian 🔗 buff.ly/BafFlVO #HemofiiliaganNaised #WomenWithBleedingDisorders

✨ What do you hope for by 2039? 🚀 This #WHD2026, add your voice to our time capsule. 📩 Complete one sentence prompt: sealed on April 17, 2026, opened in 2039. 📣 Deadline for submission: 18 March. 👉 buff.ly/SVE3JRv #WorldHemophiliaDay #WorldHaemophiliaDay

📣Today, we mark #RareDiseaseDay with the global community 🌍 For those living with #ExtremelyRare #BleedingDisorders, the path to diagnosis & care is rarely easy. #ERIN exists to connect, amplify, and stand beside you — because your voice matters. 💚 @rarediseaseday.bsky.social

🗣️ Next week, EHC CEO Olivia Romero Lux & Public Policy Lead Roberta Sadauskaite will join this interactive discussion on the European Union's List of #CriticalMedicines & what it means for #RareDisease communities like ours. Don't miss it, register now!👇

❓#Ageing with #BleedingDisorders brings unique challenges. What worries you? Share your questions anonymously 👉 buff.ly/15hLxQi 🎯 We'll address them throughout our year-long project #LivingWellAgeingWell. Check its resources: buff.ly/mB2IPh0

💥 Fear of falling can be just as limiting as falling itself. Our new one-pager has simple tips to help people with bleeding disorders stay strong & confident at home & beyond. 💪 #LivingWellAgeingWell #HealthyAgeing #BleedingDisorders #PatientEducation

💪 Falls are a serious concern for older adults with #BleedingDisorders, but there's a lot you can do to stay strong and mobile! ▶️ Our latest Virtual Café Talk on #Ageing covers exactly that 👇 youtu.be/Y3CJPwJKyAk?... #LivingWellAgeingWell #HealthyAgeing #FallPrevention

📢 The EHC Public Policy Review (PPR) is out! Covering #EUHealthPolicy developments from Jan 2025 to Jan 2026, it breaks down what matters most for the #BleedingDisorders community — pharma reform, #EHDS, #HTA, #CriticalMedicinesAct, EU Biotech Act & social care. 📖 buff.ly/vIIDSak

🩸Living with #FactorVDeficiency means nosebleeds that won't stop, bruises from nowhere & bleeding that keeps going. This rare clotting disorder affects people of all ages— & awareness matters. 🔗 Learn more: buff.ly/wg3GP88 #ERIN #ExtremelyRare

📚 "Emma and the Playhouse" is now available in 4 languages: English, German, French & Dutch! This children's book helps kids with #VonWillebrandDisease explain their condition. Download: buff.ly/AuIMOiw 💌 Want to help translate? Contact [email protected]

EHC takes part in the @ema.europa.eu Patients' and Consumers' Working Party meeting. From pharmaceutical legislation to HTA, medicine shortages and patient experience data, we are calling for strong patient involvement and reliable access to treatments for the bleeding disorders community.

🗣️ Niamh O’Connell opened the #EAHAD2026 congress today with a short lesson in Irish: “Metheal - a collective effort by a community for the common good.”

🗣️ At #EAHAD2026, EHC contributed to the #EUHASS meeting yesterday. This pharmacovigilance group plays a critical role in identifying safety signals for treatments to help keep patients safe.

📣 The EHC joins the #WFH global call to @who.int, urging support for a World Health Assembly resolution on Global Action to Advance Health Equity for People with #Haemophilia and Other #BleedingDisorders. Read our open letter 👉 wfh.org/article/wfh-... #HealthEquity #WHO

📣 On European #VonWillebrandDisease Awareness Day, we're highlighting a critical gap: #VonWillebrandFactor is absent from the EU #CriticalMedicine List. 🇪🇺This threatens patient safety & must be addressed urgently. Read more 👉 tinyurl.com/5277aby7 #VWDay @stinebosse.bsky.social

📢 On European #VonWillebrandDisease Awareness Day 2026, we amplify the voices of patients across Europe sharing their experiences & challenges.❤️ Thank you to everyone who made the invisible visible! #VWDay #beVWDaware #VWDunited #VWDtogethere

📢 The January 2026 EHC Novel #Treatment Review (#NTR) is here! Highlights from #ASH2025, regulatory updates & advances in haemophilia treatment—FVIII mimetics, gene therapy, rebalancing therapies & more. 👏 Thanks to our NTR Working Group! 🔗 buff.ly/q09vsZp

🎉 Welcome to our #WomenAndBleedingDisorders Committee’s new members! Together, we'll continue supporting & advocating for #Women in the #BleedingDisorders community. Thank you to outgoing members for your dedication & valuable contributions! 👉 buff.ly/mQhkkmW

🎉 Welcome to our Mental Health Working Group’s new members! Together, we'll continue supporting #MentalHealth & wellbeing in the #BleedingDisorders community. Thank you to outgoing members for your dedication & valuable contributions! 👉 buff.ly/akJ1roF

🎉 Welcome to our #ERIN Committee’s new members! Together, we'll strengthen ERIN's impact, raise awareness & advocate for better care for #ExtremelyRare #BleedingDisorders. Thank you to outgoing members for your dedication! 👉 buff.ly/BWGSWaj

📚 Today is International #EducationDay! At EHC, we empower the bleeding disorders community through EHC Academy—our platform for treatment education, health policy, care resources & more. 🔗 Explore: academy.ehc.eu #BleedingDisorders #EHCAcademy

❓Ageing with a bleeding disorder brings unique challenges. What worries you? Share your questions anonymously 👉 buff.ly/15hLxQi 🎯 We'll address them throughout our year-long project#LivingWellAgeingWell, check its resources: buff.ly/mB2IPh0

📢 Essential new #VonWillebrandDisease resource! The EHC Handbook on #VWD covers symptoms, diagnosis, treatment & more. 🎯 Perfect for EHC National Member Organisations, patients & families. Get your copy & share: buff.ly/bpYYYnv #EHCommunity

🩸#ExtremelyRare Bleeding Disorder of the Month: #GlanzmannThrombasthenia (GT) —a rare platelet disorder affecting daily life. 🔎 Learn more about GT & support better care access: community.ehc.eu/focus-area/e...