✨ 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
#FactorVDeficiency #ERIN #ExtremelyRare
🩸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 vwd@ehc.eu
🗣️Day 2 at #EAHAD2026! In the Women and Girls with #BleedingDisorders session, Roseline d'Oiron sharing insights on pregnancy-related challenges for women with #GlanzmannThrombasthenia. Important perspectives on maternal care. 🩸
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.
At #EAHAD2026, Alison Dougall, Member of the EHC European Rare & Inhibitor Network (#ERIN) Committee, talks about how #OralHealth is the "canary in the coal mine" of poor health in people with #BleedingDisorders.
🗣️We're excited to kick off the #Ageing session at #EAHAD2026! Looking forward to exploring how we can optimise care for our ageing #BleedingDisorders population & address the unique challenges they face. 🩸
🗣️ 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
@eupatientsforum.bsky.social @eahad.bsky.social @eurordis.bsky.social @erneurobloodnet.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
