EHC - European Haemophilia Consortium

📢 We're hiring! The EHC is recruiting a Public Policy Intern through the Youth Fellowship Programme. 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. ✅ Open to members of EHC National Member Organisations ✅ Minimum Bachelor's degree required ✅ Legal right to reside and work in Belgium 📩 Apply by 28 June 2026 Find out more and download the full vacancy notice 👇 https://lnkd.in/dtSEWAzZ #PublicPolicy #Internship #BleedingDisorders #HealthPolicy #EUAdvocacy #YouthFellowship

“When I was 4 years old, my youngest brother was born. When he was about 3 years old, he had his tonsils removed and suffered two cardiac arrests after the operation. After examination, it turned out he had severe haemophilia A. When I was about 16, a family screening revealed that I was a carrier with a factor VIII level of 20%. I was immediately put on the pill to control my heavy periods. When I was 30, I had twins. My factor level was tested at the hospital during the last term of pregnancy, but I never heard the result. I did have an epidural, which I now know was actually far too dangerous. At age 41, my uterus was removed due to heavy periods. After the surgery, I received high doses of factor VIII to prevent bleeding. In 2018, I was diagnosed with breast cancer and underwent surgery again. After this surgery, I also received a large dose of factor VIII. After this second large dose of factor VIII, my body developed inhibitors, and my factor VIII dropped to below 0.5%. This is actually uncommon in women, so there is little knowledge about it. After experiencing rapid muscle bleeding in my arms and an ankle haemorrhage, I was allowed to start emicizumab. Since receiving my inhibitors, I have been viewed and treated as a full-fledged patient. When our daughters were two years old, we had them tested for their factor VIII level. One daughter turned out to have a factor VIII level of 19%. Our other daughter appeared to have no problems. Fortunately, this allowed us to act quickly whenever she had another nosebleed. She also has heavy periods. A few years ago, my daughter broke her ankle and had to go to the hospital. She was taken to a hospital that did not have a haemophilia treatment centre. They had no knowledge of this disease. Fortunately, she was able to stand up for herself well, and she was later treated further at the right hospital. Because I now have an inhibitor, my daughter can’t be treated with factor VIII, as the doctors are afraid that our variant is susceptible to inhibitors. A proper diagnosis has therefore been very important for her so that she can now live with the right treatment.” - Eke Hullegie, The Netherlands This is one of the stories we are proud to bring forward as part of Project Elevate Her. This June, 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. Donate and learn more: www.projectelevateher.com #ProjectElevateHer #MontBlanc2026 #WomensHealth #BleedingDisorders #HealthEquity

📢 Registrations are now open for the EHC Health Economics Course 2026! 🗓️ Course dates: 15 September – 23 October 2026 💻 Format: Online 💰 Free of charge For a decade, the EHC has been educating patients, National Member Organisations, students, and researchers on health economics, health technology assessment (HTA), and procurement in bleeding disorders. Through self-paced webinars and interactive materials, the 2026 programme covers: 📌 Module 1 – Introduction to Health Economics 📌 Module 2 – HTA: Understanding Outcomes 📌 Module 3 – HTA in Bleeding Disorders: Applied Cost-Effectiveness & Budget Impact Analysis 📌 Module 4 – Payment Models In all three previous editions, 100% of respondents rated the course positively. Don't miss your chance to build your expertise and strengthen your ability to engage in HTA processes! ⚠️ Places are limited — submission of the registration form does not guarantee a spot. All applications will be reviewed by the EHC team. Note: Industry representatives will not be accepted as attendees. 👉 Register here: https://lnkd.in/epc5DdTQ ⏰ Registration deadline: 14 September 2026 Questions? Contact education@ehc.eu #HealthEconomics #HTA #BleedingDisorders #Haemophilia #PatientEducation #RareDisease

“Diagnosis changes everything. I am Vesna Kropivšek from Slovenia, 41 years old. Last year, around World Haemophilia Day and my 40th birthday, I received the diagnosis of haemophilia B, factor IX 0.21. In that moment, I thought about how many health complications I had experienced so far, and how they could most likely have been avoided or prevented — if I had been diagnosed with haemophilia. Upon receiving the diagnosis, I was both sad and happy. I had a large number of complications related to bleeding, and no doctor had ever suspected haemophilia. When my wisdom tooth was removed, I bled heavily and had to go to the emergency room. The same happened after laser mole removal, which also ended with severe bleeding and an emergency visit. During an in vitro fertilisation procedure, my ureter was accidentally punctured, and the cause of the bleeding was discovered only after a few days, when I already had severe bleeding into the abdominal cavity. For successful treatment, I received a transfusion of 5 units of blood. When my gallstones were removed, internal bleeding occurred—again, no one suspected anything. During ear surgery (otosclerosis), I lost hearing in one ear and am now deaf on that side. I assume that blood most likely flooded the ear canal after the operation. Doctors could not explain how such a serious complication—permanent hearing loss—could occur during such a routine procedure. In addition to all these complications, I constantly had very heavy menstrual periods with large blood clots, which my gynaecologist considered completely normal. During the first days of menstruation, I had to carefully plan where I went so I could change pads and tampons in time. Even one hour could be too long for a tampon and a night pad. Because of this, I was often anaemic; iron deficiency made me extremely tired and prevented me from living a normal life. I also received iron infusions, but my body often did not tolerate them, leading to further complications. After being diagnosed with haemophilia, I decided to undergo a gynaecological procedure (uterine curettage), and now there is practically no more bleeding. I am no longer anaemic, and, consequently, there is no more fatigue. My energy has returned. The procedure was planned by haematologists and went without complications. My quality of life is much better. My children were also tested. My daughter does not have haemophilia and is not a carrier, while my seven-year-old son has haemophilia type B, factor IX 0.17. His life has also changed somewhat, as he is a very active athlete, and caution with injuries is important. The reason for the discovery was a serious surgical complication in my sister, and fortunately, the doctor thought of haemophilia and advised the whole family to get tested. To all women who experience heavy menstruation and anaemia, I recommend testing for haemophilia. It could change their lives for the better.” - Vesna Kropivšek, Slovenia

EHC Vice-President Tatjana Markovic was proud to represent the EHC in Geneva at the 79th World Health Assembly (WHA) Side Event: “Advancing Health Equity for Bleeding Disorders”. The event, organised by the World Federation of Hemophilia / Fédération mondiale de l'hémophilie and co-hosted with partners including Schweizerische Hämophilie Gesellschaft (SHG) — the Swiss EHC National Member Organisation — brought together policy-makers, clinicians, advocates, Ministries of Health, and international organisations to support the proposed WHA Resolution on “Global Action to Advance Health Equity for People with Haemophilia and Other Bleeding Disorders”. This marks a major milestone for our community worldwide. For the first time, haemophilia and other bleeding disorders are gaining recognition as a distinct global health priority, paving the way for stronger advocacy, improved diagnosis, and better access to treatment and comprehensive care. 🌍 👇

What questions do you have about ageing with a bleeding disorder? 📣 We all experience ageing differently — and for people with bleeding disorders, it can bring specific concerns and challenges. The EHC wants to hear from YOU. What worries you? What do you want to know more about? Share your questions anonymously here 👉 https://lnkd.in/eK2Hc9KZ Your questions will be addressed throughout "Living Well, Ageing Well" — our 2025-2026 programme dedicated to supporting our community as we age. No question is too small. Let's learn and grow together! 🤝 #LivingWellAgeingWell #BleedingDisorders

“My journey started with my first period, just like it does for so many other women with bleeding disorders. But let’s start from the very beginning. I was born and raised in Sweden, one of four children. I was a very active kid and loved playing sports. I didn’t get my first period until I was 17. At the time, I was an exchange student in the States. Of course, I happened to be wearing beige pants on that particular day! With the help of a lot of toilet paper stuffed in my underwear, I managed to survive the day. I didn't really compare myself to anyone else back then; I just thought, 'This is how it’s supposed to be.' Even as a young adult, I had painfully long periods and was constantly exhausted, never realising I was actually anaemic. I was 30 when I got pregnant with my first child. I had a great pregnancy and thoroughly enjoyed the break from my periods. I gave birth to a perfect baby boy, but when he was six months old, the first alarm bells went off because of some strange bruising. When I went to the paediatrician, I didn't get help; instead, I was accused of child abuse. Thankfully, the paediatrician didn't take those accusations further than a personal level, but it was traumatising. My son was finally diagnosed at 18 months, unwillingly, by that same doctor. Because he was diagnosed with severe haemophilia B with inhibitors and an allergy to Factor IX, his childhood was very turbulent. I was so focused on him that I had no time to think about my own heavy bleeding. I actually had my factor levels measured once when my son was diagnosed; they were around 40%. But nothing more was said or done. It was simply stated that I was a “carrier”. There was no known history of bleeding disorders in my family. Years later, after a tooth extraction, I bled profusely and called my son’s haematologist. He suggested I take one of my son’s Tranexamic acid pills to see if it helped. It felt like magic! Around that time, I started taking those pills whenever I had my period, and it worked wonders. Suddenly, I didn't have to bleed for 8–10 days every month. I didn't have to change my pads in the middle of the night or deal with large blood clots. I finally felt like a “normal” woman and realised that what I had been experiencing all those years was far from normal. I was finally officially diagnosed at age 44 because I had an upcoming surgery. It turned out I wasn't just a carrier; I also had von Willebrand Disease Type 1. The struggles returned with my periods during perimenopause and menopause. After doing a lot of my own research—and changing gynaecologists several times over the years—I discovered a menopause clinic at the hospital in Bern. There, they actually listened to me and helped. I’m now 58 years old, the proud owner of an emergency card with my diagnosis, on hormone treatment, and feeling awesome!” - Camilla Wensing, Sweden/Switzerland

The EHC is in Lyon this week to share our expertise with the European Inter-University Certificate in Clinical Haemostasis (DIU Européen d'Hémostase Clinique), hosted at Hôpital Louis Pradel in Bron and led by Prof Yesim Dargaud. This intensive programme brings together physicians from across the French-speaking European community to train in bleeding and thrombotic disorders. 🎓️ We are proud to contribute the bleeding disorders patient perspective throughout the week, presenting "Women Bleed Too" — shining a light on the fact that bleeding disorders affect women too, and that their experiences must shape how we train and treat. Highlights this week include clinical case presentations by high-level experts Dr Maria Elisa Mancuso and Dr Cedric HERMANS MD PhD FRCP (Lon,Edin), exploring best practices and treatment options in haemostasis care. Patient advocacy and medical education: stronger together. 🤝 #WomenWithBleedingDisorders #WomenBleedToo #Haemophilia #BleedingDisorders #ClinicalHaemostasis

🩸 Extremely Rare Bleeding Disorder of the Month: Factor II (Prothrombin) Deficiency Factor II Deficiency is an extremely rare inherited bleeding disorder. It is passed down through families when both parents carry a changed gene. People with this condition don't have enough of a protein called prothrombin, which the body needs to form blood clots properly. This can lead to nosebleeds, easy bruising, heavy periods, or bleeding that takes longer than usual to stop after an injury, dental work, or surgery. Because this condition is so rare, it often takes a long time to receive an accurate diagnosis, and many people have never heard of it. Having access to specialist doctors and a care plan that is tailored to each person is key to staying safe and well. Finding it early and getting the right care can make a real difference in everyday life. Spreading the word helps more people get diagnosed sooner, receive the right treatment, and feel understood. 🔎 Want to learn more? 🔗 Visit the ERIN Focus Area on our EHC Community website to explore webinars, podcasts, and publications dedicated to extremely rare bleeding disorders: https://lnkd.in/dNuanzmk #FactorIIDeficiency #ProthrombinDeficiency #RareBleedingDisorders #RareDisease #ERIN #ExtremelyRare

Delighted to be speaking in this multi-disciplinary session about the impact of oral status on cardiovascular health in this patient education session for those with bleeding disorders.. Its organised as a collaboration between the European haenophila Consortium and eurobloodnet.eu Dublin Dental University Hospital and School of Dental Science #nohealthwithoutoralhealth