Executive Summary: EHC Round Table on “Current Issues in von Willebrand Disease”
On 10 September 2024, the EHC hosted its first post-pandemic Round Table on “Current Issues in von Willebrand Disease” in Brussels, Belgium. The event took place at the Warwick Hotel from 13:00 to 16:30, and was co-chaired by Miguel Crato, EHC President, and Dr Maria Elisa Mancuso, Chair of the EHC Medical Advisory Group. The […]
Update on Novo Nordisk manufacturing deviation for NovoSeven©, NovoEight©, and Esperoct©
Mid-June 2024, the European Haemophilia Consortium (EHC), the National Bleeding Disorder Foundation (NBDF) and the World Federation of Hemophilia (WFH) were made aware of a manufacturing deviation in the production lines of several products for the treatment of haemophilia and other coagulopathies manufactured by Novo Nordisk in Denmark, mainly NovoSeven (1 and 2 mg vials), […]
The EHC is looking for a Project Assistant to join the team!
The EHC is seeking a dedicated and highly organised Project Assistant (internship opportunity) to join our dynamic team at the EHC. The Project Assistant will support the Behavioural Change Lead in coordinating and implementing projects aimed at improving patients’ quality of life. This role involves a combination of project and event support, administrative tasks, and […]
Meet Roberta Sadauskaitė, EHC Public Policy Lead
We are delighted to introduce you to our latest EHC addition, Roberta Sadauskaitė, who joined us in September 2024 as Public Policy Lead. Roberta, welcome to the EHC, can you tell us more about yourself? I was born and raised in Lithuania, where I graduated from Vytautas Magnus University with a Bachelor’s in International Politics […]
Take your chance on the next EHC NMO Lottery at the #EHC2024!
Don’t miss the chance to participate in the next EHC NMO Lottery that will be held at the EHC Conference 2024 (#EHC2024) in Sofia, Bulgaria, from 4 to 6 October! Join the EHC staff at one of our stands at the conference venue to register your NMO for the lottery. The prize? ONE free registration for […]
Join the next #ThisWay Autumn Challenge leading up to the EHC Conference 2024
Join the next #ThisWay Autumn Challenge – this time, we're changing things up! Unlike past challenges, we're all in this together. The goal? To collectively cover 1000 km — half the distance from Brussels to Sofia — in just two weeks leading up to the EHC Annual Conference to be held from 4-6 October in Sofia, [...]
The EHC Von Willebrand Disease Committee Calls for a Volunteer
The EHC announces the call opening for one volunteer from its NMOs to join the Von Willebrand Disease (VWD) Committee until the end of the current mandate (end of 2026). The EHC VWD Committee was set up as a working group in 2020 to lead the ‘EHC VWD Platform for Europe.’ This platform promotes forming […]
A #ThisWay Story: Camilla Wensing
“Life with haemophilia is challenging, but it doesn’t define us.” In the framework of our #ThisWay Campaign, the EHC interviewed Camilla Wensing, a caregiver from Switzerland/Sweden, CEO of the Swiss Haemophilia Society, who shared with us her journey raising her son Enea, who is a patient with severe haemophilia B with a high-responding inhibitor. She described […]
‘System change in practice: A report from the EHC Think Tank workstreams on Access Equity and Future Care Pathways’ just published
The open-access paper System change in practice: A report from the EHC Think Tank workstreams on Access Equity and Future Care Pathways is now published in The Journal of Haemophilia Practice. This final report from the EHC Think Tank’s workstreams on Access Equity and Future Care Pathways summarises recommendations for system change and the actions […]
The EHC joins a call to action of concerned stakeholders on the implementation of the EU HTA and Joint Clinical Assessment for ATMPs
JCA should not hamper access to transformative ATMPs The EHC joins a group of patients, clinicians, academic medical centres, and therapeutic developers and manufacturers in signing a call to action for the successful roll-out of the Joint Clinical Assessment (JCA). With the adoption of the Implementing Act on the JCA for medicinal products and the […]
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.
