About the EHC Women and Bleeding Disorders Committee
The Women and Bleeding Disorders Committee of the European Haemophilia Consortium (EHC) officially started in 2018. However, this committee came together following several initiatives led by passionate volunteers within the haemophilia community.
In 2015, the EHC ran a first pre-conference workshop ahead of its scientific conference in Belgrade, Serbia on ‘Starting a European conversation for women with bleeding disorders.’ The title of the event was quite prophetic as, thanks to a group of dedicated volunteers from across Europe, the EHC increased its focus on women over the years exponentially. Activities on women and bleeding disorders ranged from specific sessions in EHC scientific conferences to EHC’s youth debates and Leadership Conference.
In 2017, EHC surveyed its members, patient associations, haemophilia treatment centres and women with bleeding disorders on this community’s issues. The responses were astonishing, with over 700 responses detailing the reality of what it means for a woman to live with a bleeding disorder in Europe. The responses were analysed and published in the scientific journal Haemophilia.
The second significant milestone of 2017 was the creation of a Committee for Women and Bleeding Disorders, which started officially in 2018 and since then, committee members meet every month to advance their cause: creating awareness, recognition, support, and education about and for women in the bleeding disorder community at the European level.
The work of women and bleeding disorders culminated in May 2019 with a first stand-alone international conference on women and bleeding disorders. This was the first conference of its kind.
The EHC Women and Bleeding Disorders Committee (2023-2025 mandate) is composed of:
Anna Tollwé – chair
Swedish NMO
Marion Bräuer
Austrian NMO
Yannick Collé
French NMO
Ana Cristina Monteiro Pastor
Portuguese NMO
Brina Zaman
Slovenian NMO
Bernadetta Pieczynska
Polish NMO
Tatjana Markovic
EHC SC member, Serbian NMO
The work of this committee is supported by Zita Gacser, EHC Behavioural Change Lead.
WBD movies and clips
Events
Resources
Diagnosis Quiz
flyer-postcard_WBDDownload the template quiz flyer and personalise it to your language
Download the template quiz flyer print version
EHC WBD Committee Annual Report 2018
EHC-WBD_Annual_Report-4pages_printA3Contact
If you would like to get in touch with members of the EHC Women and Bleeding Disorders Committee, please contact Zita Gacser at the EHC office.
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.
