Key Findings From the World Federation of Haemophilia National Member Organization Survey on Women and Girls With Bleeding Disorders

INTRODUCTION: Women and girls with bleeding disorders (WGBD) face challenges in accessing timely and specialized care. There is a need for comprehensive data, particularly regarding care and clinical management, to inform advocacy initiatives and policy decisions to standardize and improve access to care. AIM: To conduct a survey of World Federation of Hemophilia (WFH) National Member Organizations (NMOs) on the provision of care and various services for WGBD. METHODS: WFH NMOs completed a questionnaire comprising six themes related to care for WGBD: (1) socioeconomic and cultural challenges, (2) access to healthcare services/programmes/treatments, (3) level of awareness of patients and providers regarding WGBD, (4) availability of programmes and services, (5) challenges in addressing specific needs and (6) challenges in data collection for advocacy, education, and training. RESULTS: Socioeconomic and cultural challenges included women not recognizing/identifying themselves as patients, poverty-related barriers, discrimination and sexism. Obstacles to receiving care encompassed limited awareness and use of diagnostic tools and lack of special clinics. Level of awareness on topics related to WGBD varied greatly across NMOs. Almost half (45%) of NMOs responded they collected data for advocacy purposes; challenges in data collection were mainly due to limited access to reliable and comprehensive data sources. CONCLUSION: The survey identified key challenges in providing and delivering care to WGBD. Strategies and initiatives should focus on raising awareness, expanding access to care, establishing special clinics, and improving outreach, as well as increasing women's representation on committees and boards and increasing education initiatives.