{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,2]],"date-time":"2026-10-02T14:04:34Z","timestamp":1790949874709,"version":"4.1.0"},"reference-count":10,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2026,1,26]],"date-time":"2026-01-26T00:00:00Z","timestamp":1769385600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2026,1,26]],"date-time":"2026-01-26T00:00:00Z","timestamp":1769385600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100014321","name":"World Federation of Hemophilia","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100014321","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2026,3]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>To conduct a survey of World Federation of Hemophilia (WFH) National Member Organizations (NMOs) on the provision of care and various services for WGBD.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Socioeconomic and cultural challenges included women not recognizing\/identifying themselves as patients, poverty\u2010related 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70213","type":"journal-article","created":{"date-parts":[[2026,1,26]],"date-time":"2026-01-26T10:10:08Z","timestamp":1769422208000},"page":"561-567","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Key Findings From the World Federation of Haemophilia National Member Organization Survey on Women and Girls With Bleeding Disorders"],"prefix":"10.1111","volume":"32","author":[{"given":"Donna","family":"Coffin","sequence":"first","affiliation":[{"name":"World Federation of Hemophilia  Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yannick","family":"Coll\u00e9","sequence":"additional","affiliation":[{"name":"Association Fran\u00e7aise des H\u00e9mophiles  Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Roshni","family":"Kulkarni","sequence":"additional","affiliation":[{"name":"Department of Pediatrics and Human Development Michigan State University  East Lansing Michigan USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Salome","family":"Mekhuzla","sequence":"additional","affiliation":[{"name":"World Federation of Hemophilia  Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cassie","family":"Osejo","sequence":"additional","affiliation":[{"name":"Fundaci\u00f3n Paname\u00f1a de Hemofilia  Panama City Panama"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anupama","family":"Pattiyeri","sequence":"additional","affiliation":[{"name":"Hemophilia Federation (India)  New Delhi India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lauren","family":"Phillips","sequence":"additional","affiliation":[{"name":"Haemophilia Foundation of New Zealand  Wellington New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dawn","family":"Rotellini","sequence":"additional","affiliation":[{"name":"National Bleeding Disorders Foundation  New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ellia","family":"Tootoonchian","sequence":"additional","affiliation":[{"name":"World Federation of Hemophilia  Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andreina","family":"Tovar","sequence":"additional","affiliation":[{"name":"World Federation of Hemophilia  Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tahira","family":"Zafar","sequence":"additional","affiliation":[{"name":"Hemophilia Treatment Center Rawalpindi  Rawalpindi Pakistan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Baiba","family":"Ziemele","sequence":"additional","affiliation":[{"name":"Latvijas Hemofilijas biedrba  Riga Latvia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,1,26]]},"reference":[{"key":"e_1_2_10_2_1","unstructured":"World Federation of Hemophilia (WFH) World Federation of Hemophilia Report on the Annual Global Survey(WFH 2023) https:\/\/www1.wfh.org\/publications\/files\/pdf\u20102525.pdf."},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/rth2.12468"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/jth.15102"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14379"},{"key":"e_1_2_10_6_1","unstructured":"World Bank Group World Bank Country and Lending Groups(World Bank Group 2022) https:\/\/datahelpdesk.worldbank.org\/knowledgebase\/articles\/906519\u2010world\u2010bank\u2010country\u2010and\u2010lending\u2010groups."},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1538\u20107836.2010.03975.x"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/jth.15397"},{"key":"e_1_2_10_9_1","unstructured":"World Health Organisation (WHO) Women's Health(WHO 2025) accessed March 10 https:\/\/www.who.int\/health\u2010topics\/women\u2010s\u2010health."},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1466-7657.2007.00616.x"},{"key":"e_1_2_10_11_1","unstructured":"United Nations (UN) Women Press Release: One in Every Ten Women in the World Lives in Extreme Poverty(UN Women 2024) March 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