The European Haemophilia Consortium (EHC) has launched a survey to define the needs of people living with bleeding disorders and inhibitors in Europe with a view to establish a European Inhibitor Network (EIN).
Inhibitor development remains one of the main challenges in the treatment of haemophilia and other bleeding disorders as its causes are not yet understood and the treatment of this complication remains difficult and highly expensive. Inhibitor development has devasting consequences on those affected as it leaves them more vulnerable to bleeds in their joints and this often results in disabilities. Inhibitors can also have debilitating consequences on the individual’s social life and leaves the affected individuals at greater risk of social isolation.
The EHC wishes to develop a European Network to support people living with inhibitors and their families, to combat isolation and to disseminate the latest scientific information about inhibitor treatment and care. For this purpose the EHC has launched a survey in several languages aimed to be completed by the patients themselves as well as their familities and caretakers to help steer the direction of the work carried out by the EHC. The results of the survey will shape the work of the EIN and it is therefore important that the survey is completed by the largest number of patients so that it reflects accurately the needs of those living with inhibitors.
To take the survey, please follow the link belows:
Participez à l’enquête en français
Neemt het onderzoek in het Nederlands
Nehmen Sie die Umfrage in der deutschen
Participar en la encuesta en español
принять участие в опросе на русском
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.
