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.

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.

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

📣 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

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.

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.

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.

💻️ New EHC Virtual Café Talk on #Pain & #Joint Management in #Ageing with #BleedingDisorders. Pain isn't inevitable as you age, but it does need the right approach. ▶️ Watch: youtu.be/gEYZyvFzxq4 Here's what our experts had to say 🧵👇

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

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

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

🎓 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 🤝

🩸 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

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

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

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. 💙

"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

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

📣 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

EHC is attending the International Plasma Protein Congress 2026. We are engaging with global stakeholders to discuss equitable access to plasma-derived therapies and the needs of patients with rare bleeding disorders across Europe. We look forward to sharing the patient perspective at #IPPC2026.

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

🩸 In 1926, Erik Adolf von Willebrand first described a hereditary #BleedingDisorder that would later bear his name: #VonWillebrandDisease (#VWD). In 2026, we mark 100 years of progress & a moment to reflect on how far we’ve come & how far we still need to go. 🧵 #VWD100

🩸 In 1926, Erik Adolf von Willebrand first described a hereditary #BleedingDisorder that would later bear his name: #VonWillebrandDisease (#VWD). In 2026, we mark 100 years of progress & a moment to reflect on how far we’ve come & how far we still need to go. 🧵 #VWD100

🗣️Thirty voices. One poem. 🖋️ Written by Christina Burgess for the group who took part in the Mind Exercise Session at the #EHCInhibitorSummit 2019 in Barretstown. Read by Jim O'Leary. Video by Enea Atroce. #BleedingDisorders #ExtremelyRare #Poetry

📣 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