The European Haemophilia Consortium (EHC) is delighted to inform you that the European principles of care for women and girls with bleeding disorders were published in the scientific journal Haemophilia.
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. These principles will be presented during the 2021 EHC Conference. The EHC Women and Bleeding Disorders Committee will develop actions to promote them in the patient community in late 2021 and 2022.
European Principles of Care for Women and Girls with Bleeding Disorders
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Equitable access and quality of care for all individuals with bleeding disorders, irrespective of gender.
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Timely and accurate diagnosis of bleeding disorders in women and girls.
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Awareness of the additional challenges faced by WGBD throughout life.
- Provision of comprehensive care in a family centred approach.
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Inclusion of a dedicated obstetrician and gynaecologist in the multidisciplinary team.
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Education of WGBD and their families regarding the menstrual cycle and its management.
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Early recognition and optimal management of heavy menstrual bleeding.
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Provision of pre-conception counselling and access to prenatal diagnostics.
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Provision of a patient-centred comprehensive management plan throughout pregnancy and the post-partum period.
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Involvement of WGBD in registries, clinical research and innovation.
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.
