EHC is pleased to launch European Principles of Inhibitor Management in video format. This production is the culmination of two years of collaborative work by multidisciplinary care professionals from the EHC and EAHAD networks, Including haematologists, physiotherapists, nurses and psychosocial experts.
New inhibitor treatment has become available since the production of these principles. Please watch the video to its conclusion for the latest up-to-date information.
The original article outlining European Principles of Inhibitor Management was published in April 2018 is now available in a video format. This tool will serve our membership as an advocacy tool to assist in its work to receive the treatment that their inhibitor membership is entitled to! Management of inhibitors extends beyond clinical treatment of inhibitors, even with new treatment options available! Being a rare condition within a rare condition that generates a considerable amount of isolation and unexpectedness, inhibitor management unequivocally requires support such as specialist nursing care, individually tailored physiotherapy, psychosocial support, advice on employment and social security benefits, as well as maintaining healthy relationships.
Not only are new treatment options not yet widely accessible, but ITI or bypassing agents are often not available as options in many EHC NMO countries, let alone other elements of comprehensive care. We hope that this video, a potent advocacy tool, will help you gain access to these elements in your countries, or at least be the start of proactive dialogue. It is not an understatement to say a rising tide lifts all boats.
The video is available from EHC for use in your countries and NMOs. Please request the video and transcript for subtitles by writing to EHC Community Programmes Officer Kristine Jansone ([email protected]).
We are excited by this achievement and strongly applaud contributors and the Inhibitor Network.
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.
