European Principles of Haemophilia Care
This publication was the first of its kind and was a result of collaboration of clinicians and patients. It highlights the complexity of management of haemophilia, and argues that those with the disorder should have ready access to a range of services provided by a multidisciplinary team of specialists. This document sets out the principles of comprehensive haemophilia care in Europe that have served as a benchmark for the treatment and care of haemophilia ever since its publication.
The article was published in scientific journal Haemophilia in September 2008 and can be accessed here.
European Principles of Inhibitor Management (EPIM)
These publications are result of work of multidisciplinary working group of health care professionals and patients, and define practical optimum standards for ensuring and harmonising treatment and care for patients with an inhibitor. The European Principles of Inhibitor Management emphasize the importance and benefits of a centralized, multidisciplinary, expert and holistic approach.
The article was published in scientific journal Orphanet Journal of Rare Diseases (OJRD) in April 2018 and can be accessed here.
Following the advent of novel treatment options for people with inhibitors, the revised version of the article was published in OJRD in August 2020 and can be accessed here.
An infographic summarising the principles can be accessed here.
European Principles of Care for Women and Girls with Bleeding Disorders
This publication results from work led by a multidisciplinary working group composed of the Committee on Women and Bleeding Disorders of the European Association for Haemophilia and Allied Disorders (EAHAD) and members of the EHC Women and Bleeding Disorders Committee. This paper highlights the needs of women and girls with bleeding disorders in Europe. It seeks to stress the importance of access to specialised and comprehensive care for women and girls with bleeding disorders and raise awareness amongst clinicians of the needs of this cohort.
The article was published in scientific journal Haemophilia in September 2021 and can be accessed here.
An infographic summarising the principles can be accessed here.
European principles of care for physiotherapy provision for persons with inherited bleeding disorders: Perspectives of physiotherapists and patients
This publication is a result of collaboration between the Physiotherapists Committee and patient representatives from the side of the EHC. The paper argues that access to high quality individualised physiotherapy should be ensured for all PWBD, including those with mild and moderate severities, male and female, people with von Willebrand Disease (vWD) and other rare bleeding disorders. Physiotherapy should be viewed as a basic requisite in their multidisciplinary care.
The article was published in scientific journal Haemophilia in May 2022 and can be accessed here.
An infographic summarising the principles can be accessed here.
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.
