European Haemophilia Consortium

19/10/2026

Last Saturday in Verona, the EHC joined clinicians, patient representatives, and researchers at the XIX Triennial Congress on the Clinical and Social Aspects of Haemophilia, organised by the Italian Association of Haemophilia Centres (AICE). 🇮🇹

In a joint session between AICE, FedEmo, Paracelso, and EHC, our CEO Olivia Romero Lux opened with a talk on "Patient advocacy in Europe: what does it mean and what does it take?" Her message: the strongest advocacy positions are the ones patients and clinicians build together. 📣

Patient advocacy works on two fronts at once, supporting individual patients and families while changing the policies and systems that shape care for the whole community. To be effective, it has to be patient-led, evidence-based, transparent, and collaborative, and that includes working side by side with clinicians.

The session also featured:
🗣️ FedEmo (EHC Italian National Member Organisation) with Cristina Cassone and Enrico Ferri Grazzi presenting their national, international, and awareness-raising advocacy activities
🗣️ A keynote by Dr Glenn Pierce on "A life with and for hemophilia: challenges and achievements", introduced by Dr Maria Elisa Mancuso

Thank you to AICE Online for making space for this conversation.

16/10/2026

📣 Register for the EHC Exhibition and Round Table on Women and Girls with Bleeding Disorders, coming soon to the European Parliament!

Women and girls with bleeding disorders often wait years for a diagnosis. Heavy menstrual bleeding is dismissed, awareness is low, and access to care is uneven across Europe.

From 17 to 19 November 2026, hosted by MEP Nico Gonzalez Casares, the EHC Women and Bleeding Disorders (WBD) Committee brings these experiences to Brussels through personal stories, interactive activities, and educational materials.

🗓 17 November ⏰ 12:30-14:00: Exhibition opening event
🗓 17 November ⏰ 14:00-16:00: Round Table
🗓 17-19 November: Exhibition open to visitors
📍 European Parliament, Brussels

Patients, healthcare professionals, EHC National Member Organisations (NMOs), and policymakers are all welcome.

⚠️ Round table seats are limited, and registrations will be reviewed. 💰️ EHC NMOs can apply for a travel grant.

Learn more and register 👉 https://buff.ly/7PAt1fv

14/10/2026

📣 For many people with von Willebrand Disease (VWD), von Willebrand Factor (VWF) replacement is the only effective treatment. If supply runs short, there is no fallback.

That’s why the EHC is asking the European Medicines Agency and EU Member States to add VWF therapies to the EU List of Critical Medicines, so their supply gets closer monitoring and stronger safeguards. 🇪🇺

Swipe through for the key questions, and read the full campaign: https://buff.ly/bXI486B

13/10/2026

📢 Registration is open for our next EHC European Rare and Inhibitor Network (ERIN) Webinar on Fibrinogen Disorders!

Living with a fibrinogen disorder can mean facing bleeding and, in some cases, clotting challenges. Because these conditions are rare, diagnosis can be difficult, and individuals and families often face uncertainty around treatment, procedures and everyday life.

🗓 Wednesday, 11 November 2026
🕕 18:00–19:00 CET
💻 Online
🗣 English, with Russian translation available

The EHC ERIN Committee, in collaboration with the European Association for Haemophilia and Allied Disorders (EAHAD), invites you to a webinar that brings together clinical expertise and lived experience.

Featured speakers:
🗣️ Dr Alessandro Casini, Associate Professor, University of Geneva, and Senior Physician, Geneva University Hospitals. He leads the “Fibrinogen and Fibrin Clot Structure” laboratory.
🗣️ Nathan Roubaty, Patient Advocate, Switzerland

This session is open to clinicians, patients, caregivers and the wider bleeding disorders community. Come and exchange knowledge and perspectives!

Register here 👉️ https://buff.ly/J8mzYED

10/10/2026

📣 Today is World Mental Health Day. This year’s theme, “Lived experiences heard: real voices, real change”, calls for putting people with lived experience at the centre.

That’s how we built the new EHC Mental Health Toolkit for the bleeding disorders community. It draws on the 2025 EHC Mental Health Survey, in which 325 patients, carriers, and caregivers across 27 countries told us about their experiences.

Four self-contained sections, one for each audience:
✅ Patients and carriers
✅ Caregivers
✅ Healthcare professionals
✅ EHC National Member Organisation (NMO) staff and advocates

Go straight to the section that’s right for you.

🌐 NMOs can adapt and translate the content, so get in touch for guidance.

Explore the toolkit here 👉 https://buff.ly/m1xyzPX

09/10/2026

📢 Last call for our National Member Organisations (NMOs): a few spots remain for the ERIN Summit 2026!

🗓️ 4-6 December 2026
📍 Prague, Czechia

Join us for three days of peer support, education, and community building for the extremely rare bleeding disorders and inhibitor community. 🌟

✅ Up to 4 delegates per NMO
✅ Places allocated first-come, first-served

📄 Full programme & selection criteria: https://buff.ly/fG7i2MG

The ERIN Summit 2026 will take place in Prague, Czechia, from 4 to 6 December.

08/10/2026

Movement is medicine, but listening to your body is the real practice. 🧘‍♂️

Yoga teacher Nir Sharon lives with severe haemophilia A, and he shows us that movement is about listening to your body and finding what works for you. In this reel, as part of the EHC campaign, he shares a simple tip to help you move with more awareness and control.

Watch, save, and share with someone who needs a gentle reminder today. 🔄

08/10/2026

📣 Safety must remain at the heart of Europe's plasma-derived medicinal product (PDMP) supply.

People who depend on PDMPs need confidence that their treatments are safe, reliable and consistently monitored at every stage of the supply chain, from plasma donation and collection through to manufacturing, distribution and use.

This International Plasma Awareness Week, the EHC is calling attention to the importance of robust safety standards, strong pharmacovigilance and effective monitoring systems across Europe. A resilient plasma supply must go hand in hand with rigorous oversight: protecting donors, safeguarding patients and maintaining trust in plasma-derived treatments. 🩸

07/10/2026

⏰ Reminder: there's still time to apply to join our working bodies! 👇️

🧠 Mental Health Working Group — 6 spots, 1-year mandate (2027)
🩸 VWD Committee — 7 spots, 3-year mandate (2027–2029)

Open to patients, relatives/caregivers, and healthcare professionals connected to an EHC National Member Organisation.

📅 Deadline: 9 November 2026

👉 Full details and how to apply: https://buff.ly/83u073t

EHC is calling for volunteers to join its Mental Health Working Group (6 spots, 2027) and VWD Committee (7 spots, 2027-2029).

05/10/2026

📣 Access to plasma-derived medicinal products (PDMPs) should never depend on where a person lives.

For people with rare bleeding disorders, timely and reliable access to PDMPs is essential. Yet differences in plasma collection, supply, procurement and reimbursement can contribute to unequal access between countries.

This International Plasma Awareness Week, the EHC is highlighting the need for equitable, sustainable access to PDMPs across Europe. That means resilient plasma systems, effective cooperation between countries, and policies that help ensure every patient can access the treatment they need, wherever they live. 🩸