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


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 haemophiliavon 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.

Read More about the European Haemophilia Consortium (EHC)