May 23, 2019

The First European Conference on Women and Bleeding Disorders: Diagnosis, Treatment, Care, Planning, Community, Psychosocial

Frankfurt, 24 – 26 May 2019.

The European Hemophilia Consortium (EHC;www.ehc.eu, #WBDEHC) has been at the forefront of tackling issues that affect people with bleeding disorders who have otherwise been under-represented by the haemophilia community. This is its first formal conference to address the challenges faced by women with bleeding disorders – and perhaps the first conference of its kind anywhere.

It is the result of hard work by EHC volunteers who built on the positive response to a workshop tacked on to the annual scientific conference in 2015. They initiated the first survey of EHC members, patient associations, treatment centres and women with bleeding disorders to assess their experiences. The results of more than 700 responses were recently published and showed that diagnostic delay and heavy menstrual bleeding are major problems, and bleeding disorders have a significant impact on women’s thinking about having children. The EHC now has a Committee for Women and Bleeding Disorders to ensure that these issues continue to receive the attention they deserve.

The EHC is now holding a two-day conference in Frankfurt to discuss the clinical and social needs of women with bleeding disorders, with more than 150 participants from over 30 countries. Haemnet is writing the meeting proceedings and we’ll be tweeting and blogging highlights of each day’s presentations. The packed agenda includes a review of the EHC survey, discussion of genetics, raising awareness, management of menstrual bleeding and gynaecological issues, and impact on quality of life.