The EHC at the WFH 2024 in Madrid: main highlights
This WFH World Congress 2024 in Madrid was a blast, reuniting the finest professionals and the most inspiring advocates of the worldwide bleeding disorders community. Big applause to our Spanish member, Fedhemo, who hosted the event! It was a great pleasure to meet so many of our National Members Organisations (NMOs) representatives: thank you all […]
EHC Statement on the Upcoming Landscape of Recommendations in Haemophilia Care
Over the past months, our community has been made aware that the International Society of Thrombosis and Haematology (ISTH) has engaged in drafting new 13 recommendations, which were shared publicly for review and comment in November 2023. Since then, and considering the content of these 13 recommendations which raised some concerns among healthcare providers and […]
Join the EHC team at the WFH 2024 World Congress in Madrid
The EHC team is thrilled to announce that, from the 22nd to the 24th of April, we will participate as an exhibitor at the WFH 2024 World Congress in Madrid, Spain. This year’s edition is hosted by Federación Española De Hemofilia. Join EHC Staff and Steering Committee members at Booth 29 of the IFEMA Convention […]
Meet Camillla Lombardi, EHC Communication and Project Officer
We are delighted to introduce you to our latest EHC addition, Camilla Lombardi, who joined us in March 2024 as Communication and Project Officer. Camilla, welcome to the EHC, can you tell us about yourself? I was born and raised in Italy, where I graduated from the University of Bologna with a Bachelor’s in Political, […]
Join the #thisway spring challenge!
Join us for our next challenge within the framework of the #thisway campaign, aimed at promoting physical and mental health within the rare bleeding disorder community! Here’s what you need to know: Start date: Monday, March 25 Duration: 4 weeks Track any form of physical activity, including walking, hiking, cycling, swimming… Even gardening and meditation! […]
EHC announces a leadership change: Olivia Romero Lux to become the new EHC CEO
EHC is embarking on a new chapter as we announce a change in leadership. As per mutual agreement between Luis Teixeira, our current CEO, and EHC, Luis will step down from his role and leave the EHC on May 14. The Steering Committee would like to express its sincere gratitude to Luis for his dedication […]
EHC is looking for volunteers to join the EHC Women and Bleeding Disorders Committee
We are delighted to announce the reopening of applications for the EHC Women and Bleeding Disorders (WBD) Committee! The European Haemophilia Consortium (EHC) is actively seeking three (3) dedicated volunteers to join its esteemed Women and Bleeding Disorders (WBD) Committee for the remainder of the current three-year term (2023-2025). As advocates for inclusivity and empowerment […]
EHC Women’s Committee marks 2024 International Women’s Day
In honour of International Women's Day 2024, observed on March 8th, the EHC Women and Bleeding Disorders Committee is pleased to present its 7-2-1 rule infographic. Heavy menstrual bleeding is one of the primary symptoms of women affected by rare bleeding disorders and it can have a severe impact on daily quality of life. However, [...]
EHC signs the Join Statement on IP Protection for Medicines
EHC joins other organisations in signing the Join Statement on Intellectual Property Protection for Medicines. Read the Statement below
Annabel’s story
Believe, educate, advocate – a #thisway story In the framework of our #thisway campaign, the EHC interviewed Annabel Kattai (23), a patient with von Willebrand Disease, who shared with us how she overcame her struggles around sports and injections, and how she looks after her mental and physical health. We hope you find Annabel's story inspirational and her [...]
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
