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

📣 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.

🩸 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

Supply delays of Von Willebrand Factor can cause severe consequences for #VonWillebrandDisease patients - worsening health, irreversible damage, hospitalisations, even death. Health systems must recognise #VonWillebrandFactor as #CriticalMedicine. @ema.europa.eu

EHC President Miguel Crato co-authored "Qualification Criteria of #GeneTherapy for #Haemophilia" in the Haemophilia Journal. Working with @eahad.bsky.social, the research addresses infrastructure for gene therapy delivery through hub-and-spoke models.👇 onlinelibrary.wiley.com/doi/10.1111/...

📢 Our Annual Report 2024 is out! Explore EHC’s highlights, audited financials & our shared progress from the past year. 📄 Read it here 👉 buff.ly/wb4aLKb #EHC #AnnualReport

#VonWillebrandDisease can be the cause of unexplained abnormal uterine bleeding with severe chronic anaemia and iron deficiency. It’s time for health systems to recognise #VonWillebrandFactor as a #CriticalMedicine. @ema.europa.eu

#VonWillebrandDisease affects 1:1000 individuals and, if not recognised, may cause severe bleeding symptoms after trauma or surgery that can be life-threatening. It’s time for health systems to recognise #VonWillebrandFactor as a #CriticalMedicine. @ema.europa.eu

🤝 EHC has partnered with #EUPATI to enhance education & research for #EuropeanPatients. Together, we'll strengthen the voice of the rare #BleedingDisorders community & improve outcomes across Europe. Read more! 👉 buff.ly/gAOWXvb

Great to participate in @ema.europa.eu training for patients & healthcare professionals! EHC SC Member Marius Tanase joined sessions on scientific advice, regulatory pathways & document review. Valuable insights for #PatientAdvocacy work! #EMA #BleedingDisorders

"Time to make #Patients critical to healthcare systems." This message resonated at the 🇪🇺 #HTAStakeholdersMeeting panel on #HTA Regulation implementation. Patients aren't just end-users—they're experts of their condition & must be involved from the start. #BleedingDisorders

EHC had a meaningful day advocating for patients with #bleedingdisorders at the 5th #HTA Stakeholder Meeting: - Patients must be co-creators, not bystanders, in HTA; - Training is key – patient experts need the right tools; - Metrics matter – patients should have a voice in what’s measured.

✨ On 26-29 June, 80+ participants gathered in Brussels for our #EHCLeadership Conference! 🤝 Three days of collaboration, learning & strategic discussions. Highlights: welcoming Kazakhstan as our new member, community debates & access to care. See you in Vienna Oct 3-5! 🌟

🌟During the #EHA2025 , ERN-EuroBloodNet held a highly productive meeting with European Patient Advocacy Groups (ePAGs). 👉https://eurobloodnet.eu/patientsadvocacy/epag/ @eurordis.bsky.social @ehc-news.bsky.social @pnhsupport.bsky.social @pnhglobalalliance.bsky.social @ulbruxelles.bsky.social

🎉 Welcome, Kazakhstan Association of Disabled People with Haemophilia, as our 49th Member! 🤝 "Great honour to join the EHC. Ready to work together for better treatment" - Akzhan Yerikkyzy, President 🔗 hemophilya.kz #EHCommunity

🇫🇷 L’hémophilie au féminin ? Disponible en français ! 📘 We’re proud to launch the FR translation of our EHC Booklet on #WomenWithHaemophilia & Female Carriers—shining a light on misdiagnosis, stigma & the need for change. 🔗 buff.ly/YPH7n5y #FemmesEtHémophilie

🚨 🇪🇺 Critical moment for patient representation in EU medicines regulation! We stand with @eurordis.bsky.social‬ ‪‪@eupatientsforum.bsky.social‬ ‬& 70+ organisations to protect patient voting rights in @ema.europa.eu‬ committees.🗣️Our voices matter! #KeepPatientsVoting 🔗 buff.ly/st8ESjk

📢 Tomorrow join our #ERIN Webinar on Addressing the Needs of People with #ExtremelyRare #BleedingDisorders 🗓️ 10 June 🕕 18:00 CEST 🗣️ EN | RU 💻 Zoom 👥 Patients & HCPs In collaboration w/ @eahad.bsky.social‬ 🔗

🩸Women & girls can have haemophilia too! They're not "just carriers": many face heavy bleeding, delayed diagnoses & poor quality of life. EHC advocates for equal healthcare access, better research inclusion & improved education for healthcare professionals.🔗Learn more: buff.ly/2j1S5Wh

EHC was pleased to meet with MEP Romana Jerkovic to discuss the #CriticalMedicinesAct & its impact on people with #BleedingDisorders. Ensuring equitable & uninterrupted access to essential treatments remains our top priority.

📢 Next week join our #ERIN Webinar on Addressing the Needs of People with #ExtremelyRare #BleedingDisorders 🗓️ 10 June 🕕 18:00 CEST 🗣️ EN | RU 💻 Zoom 👥 Patients & HCPs In collaboration w/ @eahad.bsky.social‬ 🔗 Register now:

📢 Interruptions in access to plasma-derived treatments can put lives at risk. That’s why the EHC supports the Commit To Plasma Manifesto to urge authorities to strengthen political support & increase funding for public plasma collection programmes. 👉 committoplasma.eu

📢 Join the EHC #ERIN Webinar on Addressing the Needs of People with #ExtremelyRare #BleedingDisorders 🗓️ 10 June 2025 🕕 18:00 CEST 🗣️ EN | RU 💻 Zoom 👥 Patients & HCPs In collaboration w/ @EAHADnews 🔗 Register now:

🧠💙 As #EuropeanMentalHealthWeek wraps up, we reflect on the powerful conversations and momentum we’ve built together. Here’s what we focused on this week 👇 #MentalHealthMatters #BleedingDisorders

🇪🇺 Access to essential medicines is critical for people with bleeding disorders. 🩸 That’s why we’re engaging with MEPs @woelken.eu & Tomislav Sokol on the #CriticalMedicinesAct. We urge EU policymakers to strengthen supply chains & prioritise #RareDiseases. 💊 #HealthEquity

📣 This #EuropeanMentalHealthWeek, we urge @ec.europa.eu : stop treating mental health as an afterthought—it must be integrated from day one in rare disease care. 🇪🇺 Join our #EHCRoundTable on #MentalHealth in the #BleedingDisorders community on 23 Sept at @europarl.europa.eu ‬!

During #EuropeanMentalHealthWeek, we spotlight EHC resources for the well-being of the #BleedingDisorders community! 💙🧠 💻 Watch “Healthy Movement at Every Age” with Ilze Jece & Dr Paul McLaughlin on how movement supports #MentalHealth:

EHC is pleased to participate in #IPPC2025 to discuss the latest innovations in the research and development of plasma-derived medicines. We remain committed to advancing equitable patient access to these life-saving treatments.

📣 It’s #EuropeanMentalHealthWeek! 🧠 On 19–23 May, the EHC is shining a light on #MentalHealth in the #BleedingDisorders community. Managing a bleeding disorder isn’t just physical—it affects the mind and emotions too. Learn more 👉 ow.ly/xjZU50VUMIL

⚠️ @ema.europa.eu reports a supply shortage of NovoSeven (eptacog alfa) in several EU countries, including BE, DK, FR, DE, LU & SE. English-labelled packs may be available in some areas until the end of 2025. 🔗 More info: ehc.eu/news/europea... #BleedingDisorders #NovoSeven

🌍🩸 #EmergencyPreparedness for #WomenWithHaemophilia: Be ready before, during & after an emergency. 📥Download the full EHC Booklet containing our Emergency Room Checklist: www.ehc.eu/wp-content/u...

📣 EHC joins @isth.org, @eahad.bsky.social & WFH in urging continued innovation & equitable access in haemophilia care, as several companies have recently discontinued, paused, or scaled back gene therapy programs. 👉 www.ehc.eu/news/ehc-sup...

🎙️ EHC is on Spotify! From #ERIN Podcast to #WomenAndBleedingDisorders & #ThisWay stories — explore the diverse voices from the European #BleedingDisorders community. 💬 🌍 Follow us & tune in 👉 open.spotify.com/show/1DkWEII... #EHCPodcast #PatientVoices

🩸🌍 EHC Steering Committee Member Marius Tanase joined experts at the #wfhCCS 2025 in Dubai to tackle key issues in bleeding disorders care — from AI and ageing to joint health and pain. A strong call for more comprehensive, patient-centred care. 📣

📢 Join the EHC #ERIN Webinar on Addressing the Needs of People with #ExtremelyRare #BleedingDisorders 🗓️ 10 June 2025 🕕 18:00 CEST 🗣️ EN | RU 💻 Zoom 👥 Patients & HCPs In collaboration w/ @eahad.bsky.social 🔗 Register now: community.ehc.eu/event/webina...