European Haemophilia Consortium

12/06/2026

What a first day at the EHC Leadership Conference 2026! 🙌

We kicked off with an EHC Update, followed by rich Community Discussions on topics ranging from National Member Organisation (NMO) country visits to maintaining relationships with the pharmaceutical industry and building and sustaining committees.

A productive panel with our sponsors rounded off the afternoon, before NMO representatives gathered for the General Assembly. 🗳️

To close the evening, participants were invited to take to the streets of Brussels for the Walk before sitting down together for dinner. 🚶🍽️

More to come tomorrow!

12/06/2026

At this year's Leadership Conference, we said a heartfelt farewell to Miguel Crato, who steps down as President of the European Haemophilia Consortium (EHC) after years of dedicated leadership. Miguel's commitment, vision, and passion for the bleeding disorders community have left a lasting mark on our organisation and on the lives of people across Europe. Thank you, Miguel! ❤️

We are also delighted to welcome Tatjana Marković as EHC Interim President until October 2027. Tatjana brings with her a wealth of experience and a deep commitment to our community, and we look forward to this next chapter together. Welcome, Tatjana! 🎉

11/06/2026

Tomorrow, the EHC Leadership Conference 2026 kicks off in Brussels! 🇧🇪

We're looking forward to welcoming EHC National Member Organisations for three days of knowledge-sharing, hands-on activities, and community connection.

And, on Friday, 12 June, from 18:00 to 19:00, participants are invited to explore the city with the Walk 🚶‍♀️🚶 — a self-guided tour with eight stops, local history, hidden gems, and a short quiz at each one. No set route, no set pace. Just Brussels at your own rhythm.

Check our event programme: https://www.ehc.eu/event/leadership-conference-2026/

See you tomorrow! 👋

This annual event, dedicated to EHC National Member Organisations, fosters knowledge-sharing, allowing participants to learn from each other’s strengths, experiences, and best practices.

10/06/2026

📢 We're hiring! The EHC is recruiting a Public Policy Intern through the Youth Fellowship Programme.

✅ Open to members of EHC National Member Organisations
✅ Minimum Bachelor's degree required
✅ Legal right to reside and work in Belgium

This is a paid, full-time internship of up to 6 months, based in Brussels (hybrid), with a preferred start date of 7 September 2026.

You'll work alongside our Public Policy Lead on EU health policy monitoring, advocacy materials, stakeholder engagement, and more.

📩 Apply by 28 June 2026

Find out more and download the full vacancy notice 👇
https://www.ehc.eu/news/ehc-is-recruiting-a-public-policy-intern-for-its-youth-fellowship-programme/

The position, open to members of EHC National Member Organisations, is a full-time, paid internship of up to six months, combining work at the EHC office in Brussels and teleworking.

09/06/2026

🎓 Register for the EHC Health Economics Course 2026!

Are you a patient with a rare bleeding disorder? An NMO representative? 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. Register early! Note: Industry representatives are not eligible to attend.

👉 Register now: https://academy.ehc.eu/ehc-health-economics-course/
⏰ Deadline: 14 September 2026

Any questions? Contact [email protected]

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.

09/06/2026

"If we don't recognise bleeding disorders in women and girls, we cannot diagnose them. And if we cannot diagnose them, we cannot treat them." — Dr Özlem Turan (Consultant Obstetrician and Gynaecologist, Homerton Healthcare NHS Foundation Trust, UK)

One in four women experiencing heavy menstrual bleeding may have an underlying, undiagnosed bleeding disorder. Yet for many, the wait for a diagnosis stretches to 14 years — or even four decades. Lack of awareness among healthcare professionals, inconsistent investigation pathways, and a major gap in research addressing women's health outcomes all play a role.

Dr Turan calls on healthcare professionals and the wider community to raise the bar on awareness and earlier diagnosis, because equitable healthcare for women and girls with bleeding disorders is not optional. It is overdue.

This is one of the expert voices EHC is sharing as part of Project Elevate Her, a global initiative using the Seven Summits to raise awareness for women with bleeding disorders. This month, Maia Meier climbs Mont Blanc as the first expedition of this journey, because diagnosis changes everything.

Follow along and support the campaign: www.projectelevateher.com

08/06/2026

📢 Next month, join our European Rare and Inhibitors Network (ERIN) and the European Association for Haemophilia and Allied Disorders (EAHAD) for our Webinar on Understanding Haemophilia B With Inhibitors!

People living with haemophilia B with inhibitors face unique and complex challenges, from harder-to-control bleeding episodes to a heavier treatment burden. This online event will bring together clinical perspectives and patient voices to deepen understanding and foster meaningful dialogue.

Featured speakers:
• Dr Maria Elisa Mancuso – Senior Haematology Consultant at the Centre for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Adjunct Clinical Professor at Humanitas University, EHC ERIN Committee Advisor, Italy
• Dominik Ćepić – Patient Representative, EHC ERIN Committee Member, Croatia

🌍 Russian translation available

👉 Register now: https://community.ehc.eu/event/erin-webinar-on-haemophilia-b-with-inhibitors/

The EHC European Rare and Inhibitor Network (ERIN) Committee, in collaboration with the European Association for Haemophilia and Allied Disorders (EAHAD), invites our community to join this webinar dedicated to understanding haemophilia B with inhibitors

08/06/2026

“My name is Linda. I am the wife of a man with moderate haemophilia B. We are originally from Latvia, but in 2012 we moved to Germany. Together, we have three daughters and one son.

When I married my husband, I believed our daughters would simply be carriers of haemophilia B. I never imagined that they themselves could have bleeding symptoms.

Our first daughter was born in 2001. Whenever we visited doctors, I always mentioned that her father had haemophilia B. It was recorded in the family history, but because she was a girl, that was usually where the discussion ended.

As our daughters grew up, the signs were there. My youngest daughter suffered from severe nosebleeds. My oldest daughter experienced very heavy menstrual bleeding, iron deficiency, extreme fatigue, and even lost consciousness. Later, she underwent two emergency surgeries because of internal bleeding.

Yet no one connected these symptoms to the haemophilia in our family. More than 20 years passed before our family finally received answers.

In 2023, everything changed. After a spontaneous bleed into the muscles of his leg, my husband was admitted to Leipzig University Hospital. There, we met Dr Christian Pfrepper and paediatric haematologist Dr Lars Fischer, who helped our family finally receive the correct diagnosis and specialised care.

Testing revealed that all three of our daughters have reduced Factor IX activity. My oldest daughter has 11%, my middle daughter around 20%, and my youngest daughter only 8%. My mother-in-law also has reduced Factor IX activity.

Our story shows why diagnosis matters. Girls and women from haemophilia families can also have low factor levels and bleeding symptoms. They deserve to be tested, listened to, and taken seriously.”

- Linda Bitena, Latvia/Germany

This is one of the stories we are proud to bring forward as part of Project Elevate Her. This month, Maia Meier climbs Mont Blanc as the first expedition of a journey across all seven summits to raise global awareness for women with bleeding disorders — because diagnosis changes everything.

Follow along as this global initiative unfolds!

Learn more: www.projectelevateher.com

05/06/2026

This week, Gaëtan Duport represented the EHC at ECRD 2026 in Prague — the 13th European Conference on Rare Diseases and Orphan Products, and the largest patient-led policy-shaping event on rare diseases in Europe, organised by EURORDIS-Rare Diseases Europe.

Speaking in a dedicated session on reimbursement decisions and the future of Health Technology Assessment (HTA), he made the case that patient involvement cannot start once the framework is already set. It must begin before assessment questions are even defined, and follow through all the way to national access and reimbursement decisions.

The session addressed one of the central challenges of the current HTA framework: how to remain scientifically rigorous while genuinely adapting to rare disease realities, where evidence is limited, and uncertainty is unavoidable. For rare bleeding disorders, these questions have direct consequences for patient access to treatment.

ECRD 2026 also marked a key milestone in the development of the European Blueprint for Rare Diseases, due for publication in September 2026. EHC remains committed to ensuring the bleeding disorders community is represented wherever these decisions are being shaped.

Read the full conference highlights here 👉 https://www.eurordis.org/highlights-from-ecrd-2026/

05/06/2026

🎥 Missed our latest webinar? The recording is now available on .

Held during European Mental Health Week, this webinar features Amy Owen-Wyard, a Registered Senior Mental Health Nurse with extensive experience supporting people living with complex and rare health conditions, and the mother of a child with an extremely rare bleeding disorder.

Drawing on both her professional expertise and personal experience as a carer, Amy shares practical strategies to help manage stress and maintain well-being while caring for others. From exercise and meditation to journaling and hobbies, the session explores simple, effective ways carers can support their own mental health, while also looking at how we can better support those in caregiving roles.

Whether you are a parent, family member, loved one caring for someone with a bleeding disorder, or someone who wants to better support the carers in your life, this webinar offers valuable insights and practical advice.

▶️ Watch the recording: https://www.youtube.com/watch?v=ShfK3tNU6Gc

The EHC campaign aims to promote the importance of physical and mental health for people with bleeding disorders. This video is the second in our 20...