Press release
The European Haemophilia Consortium releases film Women and Bleeding Disorders for worldwide distribution
(Brussels, Belgium – May 29, 2019) The European Haemophilia Consortium (EHC) today announced the release of the film Women and Bleeding Disorders from director Goran Kapetanović. In creating this groundbreaking film, the European Haemophilia Consortium has begun the process of examination of these often neglected but valued members of the bleeding disorders community. The film also gives a voice to many women who have long been in the shadows.
This initiative is part of EHC’s commitment to the many patient populations of the bleeding disorders community.
“This film is decades overdue and a must-see for all members of the rare bleeding disorders community, be they patients, health care providers or other stakeholder,” says Amanda Bok, EHC CEO. “The stories bravely shared in this film, by different women from different regions but all with equally challenging journeys, paint an important picture of all that still needs to be done to better support these long-overlooked members of our community. We hope you help spread this film widely, help spread awareness and education, and join us in our work towards better recognition, diagnosis, treatment, care and quality of life for women and rare bleeding disorders in Europe.”
This film supports EHC ‘s commitment to women with bleeding disorders. Made in cooperation with the EHC’s Women and Bleeding Disorders Committee as well as medical and scientific advisory groups, the film underscores alarming statistics for women in the bleeding disorders community, namely that of 10% of all women who go to the doctor with heavy blood loss, 29% may have a bleeding disorder, yet only 2% of them will get tested for a bleeding disorder. This film begins to shed light on the ramifications and real-world experiences of women who live these statistics.
The film is part of the EHC Stories Series and continuation of work in partnership with director Goran Kapetanović (My Aunt in Sarajevo (2016), Kiruna-Kigali (2012) and The War Game (2017)). Kapetanović has directed and produced Haemophilia Stories and Inhibitor Stories with EHC.
“I was always interested to tell this story, learning how to understand human beings better in difficult situations. I am inspired and moved by personal stories from people I met making the documentary,” said director Goran Kapetanović. “I am grateful to be part of this important film project.”
For additional commentary or information, please contact EHC CEO Amanda Bok at [email protected].
Takeda contributed financially towards the “Women and Bleeding Disorders” documentary.
Download this release in its entirety in PDF
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About the EHC – European Haemophilia Consortium (EHC)
EHC – The European Haemophilia Consortium (EHC) is an international non-profit organisation that represents 46 national patients’ organisations of people with rare bleeding disorders from 27 Member States of the European Union (EU) and most Member States of the Council of Europe.
The EHC represents approximately 90,000 people diagnosed with a rare bleeding condition such as haemophilia, von Willebrand Disease (VWD) and other rare bleeding disorders across Europe. However, it is estimated that many more live with an undiagnosed rare bleeding disorder.
The EHC draws on the knowledge of patients, healthcare professionals, the scientific community, the European institutions and the pharmaceutical industry to share expertise within Europe. The EHC also collaborates closely with other European patient organisations to ensure a strong collective voice for people with rare bleeding disorders.
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.
