Hear our voices: women with inherited bleeding disorders

For years, women with bleeding disorders did not have the same level of recognition as their male counterparts. All too often, they were incorrectly diagnosed, diagnosed late—or not diagnosed at all. As a result, women with hemophilia, VWD, and other rare bleeding disorders have had a compromised quality of life. These women have felt—and, unfortunately, continue to feel—underserved and invisible.

Fortunately, the bleeding disorders community is talking more and more about the needs of women. Recently, at the First European Conference on Women and Bleeding Disorders held by the European Haemophilia Consortium (EHC), the World Federation of Hemophilia (WFH) conducted a symposium on “Raising Awareness globally for women with inherited bleeding disorders”.

The symposium included a panel discussion comprised of three European NMOs: the Latvian Hemophilia Society, the Swedish Hemophilia Society and the Slovak Hemophilia Society. Each organization has done extraordinary things for women with bleeding disorders. The Slovak Hemophilia Society is notable for having had automatic inclusion of women with bleeding disorders from its inception. The Swedish Hemophilia Society has executed creative publicity campaigns around women with bleeding disorders, and the Latvian Hemophilia Society is using international tools and instruments to bring patient needs to the forefront. The exchange amongst participants was dynamic. It allowed European NMOs to learn from each other, to ask questions and to share methods of creating awareness and conducting advocacy for women with bleeding disorders.

Some national member organizations (NMOs) have already recognized and embraced the realities of women with bleeding disorders, and are working actively to improve the quality of life of these women. For example, the Kelab Haemostasis Wanita (KHWAN), or Women’s Haemostasis Club of the Haemophilia Society of Malaysia (HSM), conducts education and awareness activities, promotes comprehensive care, and offers support through meetings, social gatherings and leadership training. Another example is the Honduran Society for Hemophilia, which works to promote the self-employment of women with bleeding disorders and empowers them to become leaders and agents of change.

The WFH plays a critical role in raising awareness of the issues and realities that affect women with bleeding disorders. Over the years, we have implemented several initiatives to highlight the need to recognize these patients and to hear their voices. However, much work remains to be done to increase clinical and patient knowledge and to ensure that women receive the proper care and treatment that they need.