The First European Conference on Women and Bleeding Disorders Frankfurt, Germany, 24-26 May 2019

Abstract

T he European Haemophilia Consortium’s (EHC) conference Women and Bleeding Disorders, held in May 2019, was the first such meeting dedicated entirely to discussing women’s experience of living with a bleeding disorder, the activities of national member organisations (NMOs), and diagnosis and medical management. The conference welcomed almost 150 delegates from nearly 30 countries, including representatives from the European Association for Haemophilia and Allied Disorders (EAHAD) and the World Federation of Hemophilia (WFH). The EHC has long sought to represent and serve women with bleeding disorders and others affected by a bleeding disorder. In 2015, it organised a preconference workshop entitled Starting a European Conversation for Women with Bleeding Disorders at its annual scientific conference in Belgrade, Serbia. The work of a group of dedicated volunteers from across Europe, has since enabled the EHC to build on this foundation to increase its focus on women, organising sessions specific to issues concerning women with bleeding disorders at scientific conferences, youth debates and its annual Leadership Conference. In 2017, the EHC created a Committee for Women and Bleeding Disorders to promote awareness, recognition, support, and education about and for women in the bleeding disorder community at a European level. The Committee organised a survey of women, NMOs and treatment centres to assess the prevalence and experience of bleeding disorders and the effectiveness of the support available. The survey showed that the needs of women with bleeding disorders are being neglected and provided the evidence on which the EHC can build a campaign to improve recognition and services for women with a bleeding disorder . The Committee invited EHC members to propose the topics to be addressed in this conference. The response was so great that it was a struggle to accommodate everything in the time available. However, the Conference Programming Committee ensured that the meeting covered a wide range of topics in plenary sessions, also providing time for delegates to talk about issues that affected them in Q&A and breakout sessions. The programme covered an overview of bleeding disorders affecting women, genetic transmission, gynaecological and nongynaecological issues, managing monthly menses, the impact of bleeding disorders on quality of life, and tackling psychosocial issues. Breakout sessions focused on family planning, and support from NMOs and treatment centres. The conference marked the premiere of the EHC’s film Women and Bleeding Disorders: Untold Stories, DEBRA POLLARD Lead Nurse, Katharine Dormandy Haemophilia and Thrombosis Centre, Royal Free London NHS Foundation Trust, London, UK