The call for nominations for the EHC Steering Committee Members and Treasurer is open: next elections to be held in October 2024!
2024 is an election year at the EHC for the renewal of its whole Steering Committee (SC) and the position of Treasurer, as agreed during the Extraordinary General Assembly of early June. The call for nominations is open to EHC National Member Organisations (NMOs) which can share applications by 26 July at 17:00 CEST. The […]
Let’s celebrate INSD together: neonatal screening for rare diseases could save lives!
On the occasion of International Neonatal Screening Day (INSD) 2024, the European Haemophilia Consortium (EHC) joins the Screen4Rare initiative in celebrating the importance of neonatal screening for those living with a treatable rare disease. Available scientific evidence from worldwide neonatal screening programmes and pilots clearly demonstrates that the early asymptomatic detection enabled by neonatal screening, […]
10 Key Recommendations from Patient Organisations on Joint Clinical Assessments under the EU HTA Regulation
The European Haemophilia Consortium (EHC) joins other leading patient organisations across Europe in releasing a set of ten key recommendations aimed at improving patient involvement in Joint Clinical Assessments (JCAs) under the EU Health Technology Assessment (HTA) Regulation. This collaborative effort highlights the crucial role of patient experiences and insights in shaping effective healthcare assessments […]
EAHAD-EHA-EHC Joint Support Statement on the EMA Draft Guideline for the clinical requirements for non-replacement therapy in haemophilia A and B
For the last thirty years, haemophilia A and B patients have been treated using FVIII and FIX replacement concentrates. These therapies are well known to both clinicians and patients. We are now entering a new era in the treatment of haemophilia and rare bleeding disorders. Novel, non-replacement therapies have been approved and are becoming available, […]
A #ThisWay Story: Adam Trojańczyk
“I think that each of us has our own ‘haemophilia’ in life – an obstacle that seems insurmountable. But how we respond to this challenge determines where we ultimately go.” In the framework of our #ThisWay Campaign, the EHC interviewed Adam Trojańczyk (39) from Poland. Living with severe haemophilia B since birth, Adam has overcome significant physical […]
Save the date: the EHC at the NBDF Wednesday Webinar Series in June 2024
The EHC is thrilled to announce that, on June 12, it will be hosted at the National Bleeding Disorders Foundation (NBDF) Wednesday Webinar Series. Representing the EHC community, there will be Miguel Crato, EHC President, and Olivia Romero Lux, EHC CEO. The topic they will discuss with the host Fiona Robinson, Ph.D, is “Increasing inclusivity […]
The EHC is looking for a Public Policy Lead to join the team!
The European Haemophilia Consortium (EHC) is looking for an experienced, analytical and passionate European Public Policy Lead to join its small, dynamic team of staff and volunteers. What about this role at the EHC? The European Haemophilia Consortium (EHC) is an international patient-led and non-profit organisation representing 48 national patients’ organisations (NMOs) for people with […]
Call for Women with Bleeding Disorders: Join the new “Study of the route to diagnosis in women with bleeding disorders in Europe”
The European Haemophilia Consortium (EHC), Gelre Hospitals (The Netherlands) and the not-for-profit organisation Vertelkracht are looking for women with bleeding disorders who would be willing to participate in the medical study “Study of the route to diagnosis in women with bleeding disorders in Europe – Semi-structured interviews using a specific artwork (poetry/music)”. You can take […]
The EHC joins the European Mental Health Week 2024 in calling for equitable mental health care
In recent years, the World Health Organization and other UN agencies, European institutions and health ministries have recognised the urgent need for commitment and action on mental health. We know more about mental health today than ever before. According to the OECD (Organisation for Economic Co-operation and Development): “Mental ill-health can have devastating effects on […]
In memory of Viktor Paskalev: a strong advocate from Bulgaria
With shock and great sadness, the EHC learned of the passing of Viktor Paskalev (1964-2024) on 24 April. He was the father of a son with severe haemophilia, and was one of the most active volunteers of the Bulgarian Haemophilia Association, the EHC Bulgarian NMO, for more than 20 years. Chairman of the Management Board […]
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.
