iiinova — where your digital self keeps evolving

European Haemophilia Consortium @ehc-news.bsky.social · 05/10/2026

📣 Access to plasma-derived medicinal products (#PDMPs) shouldn't depend on where you live. Yet gaps in collection, supply, & reimbursement mean unequal access across Europe. This #IPAW2026, the EHC is highlighting the need for equitable, sustainable access for all. 🩸

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European Haemophilia Consortium @ehc-news.bsky.social · 01/10/2026

📣Today marks the #InternationalDayOfOlderPersons. As people with #BleedingDisorders live longer than ever before, #HealthyAgeing has become a real & growing priority for our community. 🧵👇 #UNIDOP2026 #OlderPersonsDay

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European Haemophilia Consortium @ehc-news.bsky.social · 30/09/2026

#VonWillebrandDisease (#VWD) is the most common inherited #BleedingDisorder, yet recognition remains a major challenge, even among healthcare professionals. 🩸

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European Haemophilia Consortium @ehc-news.bsky.social · 23/09/2026

🎉 Big news: in 2027, the #EHCLeadership Conference is evolving into the #EHCLeadershipAndInnovation Conference, merging with the New Technologies Conference into one EHC event. 👥 Open to: 1 EHC National Member Organisation leader + 1 youth rep or staff member per organisation

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European Haemophilia Consortium @ehc-news.bsky.social · 21/09/2026

🎙️ New EHC #LivingWellAgeingWell Virtual Café Talk on #MentalHealth and Isolation in Ageing People with #BleedingDisorders! Two critical issues in our community which yet don't always get the spotlight in clinical settings. Here's why this conversation matters 🧵👇️

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European Haemophilia Consortium @ehc-news.bsky.social · 18/09/2026

🩸 Extremely Rare #BleedingDisorder of the Month: #FXIDeficiency 🔎 Low FXI levels mean bleeding can become prolonged after surgery, dental work, injury & childbirth. ⚠️ Severity varies widely & doesn't always match FXI levels. 🔗 buff.ly/9j5AAmo

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European Haemophilia Consortium @ehc-news.bsky.social · 17/09/2026

Pain that is named is pain that can be managed, together. That's the idea behind our new EHC guide, "I want to talk about my pain today!", launched on #WorldPatientSafetyDay today 🧵👇 #SafeCareForLife #BleedingDisorders

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European Haemophilia Consortium @ehc-news.bsky.social · 17/09/2026

Behind our new guide, “I want to talk about my pain today!”, are the voices of people living with #BleedingDisorders, who generously shared what #Pain has really been like for them. 🧵👇 #WorldPatientSafetyDay #SafeCareForLife

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European Haemophilia Consortium @ehc-news.bsky.social · 17/09/2026

Today, #WorldPatientSafetyDay calls for "#SafeCareForLife!", focusing on safe, ongoing care for people living with long-term conditions, whose relationship with the healthcare system unfolds over years, not single visits. 🧵👇

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European Haemophilia Consortium @ehc-news.bsky.social · 08/09/2026

Today is #WorldPTDay 🌍 For people with #BleedingDisorders, #Physiotherapy is central to protecting joint health, managing pain & staying independent. This year's global theme: cardiovascular disease & stroke. 🧵👇️

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European Haemophilia Consortium @ehc-news.bsky.social · 07/09/2026

📣 Join our next #ThisWay webinar on #Ergonomics & #Physiotherapy on #WorldPTDay 🗓️ 8 Sept 2026, 18:00–19:00 CEST 💻 Online 💪 Practical strategies for staying active with a #BleedingDisorder + live Q&A 👉 Register: buff.ly/pZRdNQG

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European Haemophilia Consortium @ehc-news.bsky.social · 28/08/2026

🎙️New Peer Pioneers episode out now! EHC host Daria Camilli sits down with patient advocate Marko Marinić & art therapist Shagi Galili to explore what #LivingWellAgeingWell with a #BleedingDisorder actually feels like beyond the physical.

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European Haemophilia Consortium @ehc-news.bsky.social · 17/08/2026

Living with #VonWillebrandDisease? Our #PatientSurvey is open until 7 September 2026! Help improve care & access across Europe 🌍 13 languages available 👉 buff.ly/HRPJBTu

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European Haemophilia Consortium @ehc-news.bsky.social · 14/08/2026

🩸 Extremely Rare #BleedingDisorder of the Month: #FactorVIIDeficiency 🔎 Low FVII levels mean clotting struggles even to get started, causing nosebleeds, prolonged bleeding, heavy periods & more. Often missed since severity varies widely. 🔗 buff.ly/T43Pp0e

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European Haemophilia Consortium @ehc-news.bsky.social · 10/08/2026

📢 EHC joins @erneurobloodnet.bsky.social & @eahad.bsky.social for a session on the global prevalence & ethnic diversity of #VonWillebrandDisease with Dr Omid Seidizadeh 🗓️ 10 Sept 2026 ⏰ 17:00 CEST 👉️ Register: buff.ly/oVWgIlZ

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European Haemophilia Consortium @ehc-news.bsky.social · 31/07/2026

📌 Discover #LivingWellAgeingWell, the EHC project on #Ageing with a #BleedingDisorder, running from 2025 to 2026! As people with bleeding disorders live longer than ever, this project has built a whole hub of resources to help. 🧵 👇️

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European Haemophilia Consortium @ehc-news.bsky.social · 29/07/2026

📢 Our latest #NovelTreatmentReview is out! Advances from #EAHAD2026, #WFH2026 & #ISTH2026 on #BleedingDisorders. 👏 Huge thanks to the EHC NTR Working Group for their excellent work! 🔗 buff.ly/lgttdwH

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European Haemophilia Consortium @ehc-news.bsky.social · 28/07/2026

🌍 Today is #WorldHepatitisDay. The EHC joins the global call to break down barriers to hepatitis prevention, diagnosis, treatment & care. 2026 theme: "Hepatitis: Let's Break It Down" 🧵 @worldhepalliance.bsky.social

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European Haemophilia Consortium @ehc-news.bsky.social · 27/07/2026

🎉 Congratulations to William McKeown, newly elected EHC Vice-President! A #BleedingDisorders patient advocate & Consultant Geriatrician, he'll now work alongside President Tatjana Markovic to lead the EHC forward. 👏

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Reposted by European Haemophilia Consortium

EAHAD - European Association for Haemophilia and Allied Disorder @eahad.bsky.social · 23/07/2026

EAHAD joins EuroBloodNet and @ehc-news.bsky.social for a joint webinar on the latest insights into the global prevalence and ethnic diversity of von Willebrand disease, based on population genetics analysis with Omid Seidizadeh. 📅 10 Sept🔗Register now: eurobloodnet.eu/education/th...

eurobloodnet.eu

Updated global prevalence and ethnic diversity of von Willebrand disease based on population genetics analysis | ERN-EuroBloodNet Thursdays webinars | Education | EuroBloodNet

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European Haemophilia Consortium @ehc-news.bsky.social · 15/07/2026

🩸 Extremely Rare Bleeding Disorder of the Month: #FactorXIIIDeficiency 🔎 Clots form... then fall apart. #FXIIIDeficiency causes unstable clots, delayed bleeding, poor wound healing & recurrent pregnancy loss. Routine tests often look normal, so the diagnosis is often missed. 🔗 buff.ly/SRFuLJH

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European Haemophilia Consortium @ehc-news.bsky.social · 13/07/2026

Living with #VonWillebrandDisease? Our #PatientSurvey is still open until 7 September 2026! Help improve care & access across Europe 🌍 13 languages available 👉 buff.ly/V0pRsXk

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European Haemophilia Consortium @ehc-news.bsky.social · 30/06/2026

The official photos of the EHC Leadership Conference 2026 are now live on our Flickr! 📸 Relive the highlights from three days in Brussels 👉 flic.kr/s/aHBqjCXikP #EHCLC2026 #EHCLeadership #EHCommunity

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European Haemophilia Consortium @ehc-news.bsky.social · 29/06/2026

📘 The EHC Annual Report 2025 is now online! Discover how we advanced education, advocacy, awareness, & community engagement for people with rare #BleedingDisorders across Europe in 2025. 👉️ Read the report: buff.ly/gzcqnE8

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European Haemophilia Consortium @ehc-news.bsky.social · 28/06/2026

On International Neonatal Screening Day, EHC recognises the vital role of early detection in improving #healthoutcomes for #newborns. We call for greater collaboration to reduce inequalities in access to #earlydiagnosis and #specialisedcare for every child. #EU4Health @‌EU_Health

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European Haemophilia Consortium @ehc-news.bsky.social · 24/06/2026

#VonWillebrandDisease (VWD) is one of the most common inherited bleeding disorders — yet it has remained under-recognised for 100 years. 🩸

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European Haemophilia Consortium @ehc-news.bsky.social · 17/06/2026

🩸 #BernardSoulierSyndrome (#BSS) is an #ExtremelyRare inherited #BleedingDisorder where platelets can't anchor to damaged blood vessels, leading to nosebleeds & heavy & prolonged menstrual bleeding. Early diagnosis matters. Learn more 👉️ buff.ly/DiLXEkt

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European Haemophilia Consortium @ehc-news.bsky.social · 12/06/2026

Today we said farewell to Miguel Crato, stepping down as EHC President after years of outstanding leadership. ❤️ And we warmly welcome Tatjana Marković as our new Interim President until October 2027! #EHCLeadership #EHCLC2026 #EHCommunity

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European Haemophilia Consortium @ehc-news.bsky.social · 04/06/2026

Our 2025 mental health #Survey revealed significant unmet needs across the #BleedingDisorders community, from poor mental well-being to difficulties accessing support. The message is clear: #MentalHealth must be part of comprehensive bleeding disorder care.

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European Haemophilia Consortium @ehc-news.bsky.social · 04/06/2026

One of the reasons mental health remains underserved in the #BleedingDisorders community is that it often goes unspoken. The EHC's 2025 mental health #Survey gave people a space to share their experiences. The more we talk openly about mental health, the easier it becomes for others to do the same.

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European Haemophilia Consortium @ehc-news.bsky.social · 03/06/2026

The EHC's 2025 mental health #Survey included patients, carriers & caregivers because #BleedingDisorders affect entire families. Their #MentalHealth & support matter.

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Reposted by European Haemophilia Consortium

EAHAD - European Association for Haemophilia and Allied Disorder @eahad.bsky.social · 02/06/2026

📣 EAHAD and @ehc-news.bsky.social come together once again, bringing together clinical perspectives, patient experiences, and interactive discussion to support a deeper understanding of Haemophilia B with inhibitors. Register now 🔗https://form.dragnsurvey.com/survey/r/b5590c21

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European Haemophilia Consortium @ehc-news.bsky.social · 03/06/2026

More than half of our 2025 #Survey respondents reported difficulty accessing psychosocial support through their #Haemophilia centre. Support shouldn’t depend on where you live or how hard you search. Better access to #MentalHealth services is essential.

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European Haemophilia Consortium @ehc-news.bsky.social · 02/06/2026

Anxiety. Burnout. Depression. These aren’t side issues for many people with #BleedingDisorders. They’re part of everyday life. Our 2025 survey found #Anxiety was the most commonly reported mental health condition among diagnosed respondents. #MentalHealth is health.

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European Haemophilia Consortium @ehc-news.bsky.social · 02/06/2026

Mental health matters in #BleedingDisorders. Our #Survey of 325 people across 27 countries found: • 44% reported poor mental well-being • 62.9% reported high burnout • 54% struggled to access psychosocial support #MentalHealth can no longer be treated as an afterthought in bleeding disorder care.

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European Haemophilia Consortium @ehc-news.bsky.social · 28/05/2026

Not sure if your period counts as heavy? Download our free factsheet and infographics to understand what heavy menstrual bleeding looks like, what counts as heavy, and 3 practical tips for managing it day to day. 🔗 Free resources here: community.ehc.eu/news/menstru... #MenstrualHygieneDay

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European Haemophilia Consortium @ehc-news.bsky.social · 28/05/2026

Did you know heavy menstrual bleeding may be linked to an inherited bleeding disorder? Many women and girls accept heavy periods as something they simply have to endure. But heavy isn't normal. Answers are available. #MenstrualHygieneDay #BleedingDisorders #KnowYourFlow

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European Haemophilia Consortium @ehc-news.bsky.social · 28/05/2026

On this #MenstrualHygieneDay, EHC shares a brief for medical professionals, with practical recommendations for incorporating routine menstrual history into clinical assessments and closing the #diagnosticgap. Simple tools. Real impact. community.ehc.eu/wp-content/u... @eahad.bsky.social

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European Haemophilia Consortium @ehc-news.bsky.social · 18/05/2026

🎓 This week, the EHC is in Lyon at the European Diploma in Clinical Haemostasis! High-level experts Dr Maria Elisa Mancuso & Dr Cedric Hermans present clinical cases while we shine a light on #WomenWithBleedingDisorders 🩸 Patient advocacy & medical education: stronger together 🤝

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European Haemophilia Consortium @ehc-news.bsky.social · 15/05/2026

🩸 Factor II (Prothrombin) Deficiency is an #ExtremelyRare inherited #BleedingDisorder that can cause nosebleeds, easy bruising & prolonged bleeding. Early diagnosis matters. Learn more 👉 buff.ly/xDkRv6C #FactorIIDeficiency #ProthrombinDeficiency

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European Haemophilia Consortium @ehc-news.bsky.social · 13/05/2026

Share your experience of living with #VWD! Take the survey now: form.dragnsurvey.com/survey/r/781... Thank you for helping us improve care and support for people living with VWD. #patientcare #AccessToTreatment #patientjourney #mentalhealth #beVWDaware #VWDunited #VWDtogethere

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European Haemophilia Consortium @ehc-news.bsky.social · 07/05/2026

During #EuropeanMentalHealthWeek, Sivan Aviv reflects on life as a #BleedingDisorders caregiver & how a mothers' group brought togetherness. 💙

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European Haemophilia Consortium @ehc-news.bsky.social · 06/05/2026

Living with a #BleedingDisorder means navigating uncertainty daily. For #EuropeanMentalHealthWeek, Samuel Baur shares practical tips for managing the everyday inside & in conversations with those around you. 💙

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European Haemophilia Consortium @ehc-news.bsky.social · 05/05/2026

"Mother guilt" is real & rarely spoken about. Milica Dimic, member of the EHC #MentalHealth Working Group, opens up about this experience among #BleedingDisorders #Caregivers & the power of community in helping us carry what we can't carry alone. 💙 #EuropeanMentalHealthWeek #EHCommunity

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European Haemophilia Consortium @ehc-news.bsky.social · 04/05/2026

You are not alone. 💙 Vasileios Kapouranis, Chair of our #MentalHealth Working Group, reminds us why mental health matters in the #BleedingDisorders community. #EuropeanMentalHealthWeek @‌mentalhealtheurope.bsky.social

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European Haemophilia Consortium @ehc-news.bsky.social · 04/05/2026

📣 This #EuropeanMentalHealthWeek, the EHC is releasing a new position paper calling for #MentalHealth to be embedded in #BleedingDisorders care across Europe. Because no one should face this alone. 💙 Read more 👉 buff.ly/DiyAKd7

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