European Haemophilia Consortium

21/08/2026

Episode 8 of 9: to a safer workspace for people with bleeding disorders 💻️

This episode focuses on screen positioning, with ergonomist and physiotherapist Andrea Wittenbecher:
✅ Top edge of the screen at or slightly below eye level
✅ Arm's length distance from the screen
✅ Tilt it slightly back
✅ Keep it directly in front of you to avoid neck strain
✅ Two screens? Set them up like an open book in front of you

Getting this right can save your neck (literally).

Stay tuned: just one more episode after this one 👇

20/08/2026

📣 Join us at the EHC 2026 Annual Conference in Istanbul, hosted by Türkiye Hemofili Derneği.

Although von Willebrand Disease (VWD) is the most common inherited bleeding disorder, it's still too often overlooked, leading to real challenges in diagnosis, treatment, and long-term care.

Don't miss this dedicated session exploring the most important topics affecting people living with VWD today:

🗣️ Jeroen Eikenboom (Leiden University) provides an update on the latest developments in VWD treatment

🗣️ Sébastien Lobet (Cliniques Universitaires Saint-Luc) examines the relationship between joint health and VWD

🗣️ Milica Dimic brings the patient voice to the discussion, sharing her perspective on prophylaxis and the impact treatment decisions can have on daily life

By combining scientific advances with patient experience, this session offers valuable insights into the evolving landscape of VWD care and the importance of a more personalised approach to treatment.

Don't miss this opportunity to be part of the conversation.

📅 Register now: https://www.ehc.eu/event/ehc-conference-2026/

Taking place in Istanbul, Türkiye, the EHC Annual Conference 2026 is hosted by Türkiye Hemofili Derneği (THD), the Turkish EHC Member Organisation.

19/08/2026

📢 The EHC is bringing together patients, clinicians, and policymakers for a Round Table on Bleeding Disorders and Cardiovascular Care in Europe, hosted by MEP Aurelijus Veryga at the European Parliament in Brussels.

As life expectancy improves, more people with bleeding disorders face cardiovascular conditions — yet care remains fragmented. With EU pharmaceutical legislation under discussion, this is a critical moment to shape policy.

🗓️ 29 September 2026, 16:30–18:00 CEST
📍 European Parliament, Brussels
⚠️ 50 seats
💶 Travel grants available: EHC National Member Organisations can apply for up to €500 to cover travel costs for up to 5 representatives.

👉 More info and registration here: https://www.ehc.eu/event/round-table-on-cardiovascular-issues-in-bleeding-disorders/

This Round Table discussion will be hosted by MEP Aurelijus Veryga at the European Parliament in Brussels.

18/08/2026

Episode 7 of 9: to a safer workspace for people with bleeding disorders 💻️

This episode is all about movement. Ergonomist and physiotherapist Andrea Wittenbecher shares why changing your working position matters:
✅ The best position is the next one — variety is key
✅ Sit, stand, or lie down — all count
✅ Don't stay in one position too long — switch before discomfort sets in

Simple habit, real benefit for your joints and muscles.

Stay tuned for more 👇

17/08/2026

📣 Last weeks to take our von Willebrand Disease (VWD) Survey!

If you're living with VWD, our patient survey is still open until 7 September 2026 — and your experience matters.

Your responses will help:
✅ Identify gaps in care across Europe
✅ Improve understanding of diagnostic timelines
✅ Assess the mental health impact of living with VWD

Available in 13 languages. Takes just a few minutes.

Take the survey 👉 https://buff.ly/HRPJBTu

Share this with anyone in the VWD community — every voice counts!

14/08/2026

🩸 Extremely Rare Bleeding Disorder of the Month: Factor VII (FVII) Deficiency

In FVII Deficiency, an extremely rare inherited bleeding disorder, low or missing levels of this protein mean the body struggles to kick-start clot formation, leading to prolonged or unexpected bleeding.

What can this look like?
🔹 Nosebleeds and easy bruising
🔹 Prolonged bleeding after injury or surgery
🔹 Heavy menstrual bleeding
🔹 Bleeding into muscles or joints
🔹 In severe cases, gastrointestinal bleeding or intracranial haemorrhage

One thing to know: symptoms vary widely from person to person, and bleeding severity doesn't always match Factor VII levels, making this a highly unpredictable condition to live with and diagnose.

Because FVII Deficiency is so rare and so variable, diagnosis is often delayed or missed. Awareness, specialised care, and individualised treatment plans are key to reducing bleeding risk and supporting long-term health.

🔎 Want to learn more?

Visit the ERIN Focus Area on the EHC Community website for webinars, podcasts, and publications on extremely rare bleeding disorders: 🔗 https://buff.ly/T43Pp0e

13/08/2026

📣 Join us at the EHC 2026 Annual Conference in Istanbul, hosted by Türkiye Hemofili Derneği.

From menarche to motherhood, women living with bleeding disorders can face unique challenges throughout their reproductive lives. Challenges that go far beyond bleeding, yet are often overlooked.

Don't miss our 2026 Conference session on "In/Fertility in Women with Bleeding Disorders: Reproductive Health Beyond Bleeding," bringing together three essential perspectives:

🗣️ Priyanka Raheja (Haematology Consultant, The Royal London Hospital) opens with "In/Fertility in WBD: From Menarche to Motherhood," discussing heavy menstrual bleeding, new treatments on the horizon, and its impact on quality of life

🗣️ Prof Rezan Abdul-Kadir (The Royal Free NHS Hospital and Institute for Women's Health, University College London) shares the gynaecological perspective

🗣️ Anna Tollwé (EHC Women and Bleeding Disorders Committee Member) brings the patient perspective to the conversation

Together, they'll explore fertility, the gynaecological challenges women with bleeding disorders may face, and the realities of navigating reproductive health.

📅 Register now: https://www.ehc.eu/event/ehc-conference-2026/

Taking place in Istanbul, Türkiye, the EHC Annual Conference 2026 is hosted by Türkiye Hemofili Derneği (THD), the Turkish EHC Member Organisation.

12/08/2026

Episode 6 of 9: to a safer workspace for people with bleeding disorders 💻️

The series continues with a look at your mouse and keyboard setup with ergonomist and physiotherapist Andrea Wittenbecher.

⌨️ Keyboard:
✅ A compact keyboard (no numpad) lets you place the mouse closer, easing shoulder strain
✅ An ergonomic keyboard also helps keep your wrist in a neutral position

🖱️Mouse:
✅ A vertical mouse keeps your wrist in a neutral position, reducing strain on the wrist and elbow
✅ Choose one that feels comfortable and fits your hand well.

Stay tuned for more 👇

11/08/2026

🔔 Registrations are still open for the EHC Health Economics Course 2026!

Are you an EHC National Member Organisation representative? A patient with a rare bleeding disorder? A student or researcher? This FREE online course is designed for you. 📚

🗓️ Dates: 15 September – 23 October 2026
✅ 100% of past participants rated it positively — three years running!

Over four modules, you'll explore health economics, health technology assessment (HTA), cost-effectiveness analysis, and payment models, all in the context of bleeding disorders.

⚠️ Spots are limited, and places are confirmed upon review by the EHC team. Note: Industry representatives are not eligible to attend.

👉 Register now: https://academy.ehc.eu/ehc-health-economics-course/

For a decade the EHC has provided NMOs and a wider community with education on the evolution of health economics, tender process, and procurement in bleeding disorders.

10/08/2026

📢 Register for our upcoming webinar on the global prevalence and ethnic diversity of von Willebrand Disease (VWD) in one month!

Based on new population genetics research, this session will bring fresh insight into how VWD affects communities differently around the world. The EHC is proud to co-organise it with EuroBloodNet - European Reference Network on Rare Hematological Diseases and the European Association for Haemophilia and Allied Disorders (EAHAD).

🗓️ 10 September 2026 ⏰️ 17:00 CEST
🎙️ Speaker: Dr Omid Seidizadeh, BMLS, MSc, PhD, Research Leader at the Angelo Bianchi Bonomi Hemophilia and Thrombosis Center in Milan, Italy

🔗 Register here: https://buff.ly/oVWgIlZ