{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,3]],"date-time":"2026-04-03T06:20:55Z","timestamp":1775197255319,"version":"3.50.1"},"reference-count":20,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2023,9,17]],"date-time":"2023-09-17T00:00:00Z","timestamp":1694908800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2023,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Inherited bleeding disorders (IBD) are genetic conditions that affect blood clotting, leading to complications such as prolonged or spontaneous bleeding into muscles or joints. Early identification and treatment are crucial to prevent complications and improve outcomes. However, effective patient outreach and identification programs for IBD face significant challenges globally.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aim<\/jats:title><jats:p>This study aimed to identify successful patient outreach initiatives for IBD, barriers encountered during implementation, and approaches used to overcome them.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>The World Federation of Haemophilia (WFH) conducted a survey of its national member organizations and other patient associations, totalling 153 organizations, to identify common strategies, barriers to their implementation, and solutions for outreach and the identification of people with IBD. The survey consisted of both closed\u2010ended and open\u2010ended questions, and the data were analysed using descriptive statistics and thematic analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Common challenges included resource and sustainability\u2010related aspects such as financial constraints, limited lab equipment for diagnosis, and inadequate government commitment. Significant barriers also encompassed physical\/geographical challenges like difficulty accessing remote areas, and inadequate logistical support and transportation. Seven themes emerged to enhance patient outreach: resource mobilization; awareness\u2010raising and advocacy; knowledge and capacity building; collaboration and partnership; decentralization of services; improved logistical support and infrastructure; utilization of technology and innovation; and financial aid and incentives.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Multistakeholder collaboration, coupled with secured government commitment, is crucial for improving global outreach, diagnosis rates, and access to care for individuals with IBD. Customized outreach programs should consider regional contexts, financial constraints, and prioritize innovation.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.14862","type":"journal-article","created":{"date-parts":[[2023,9,18]],"date-time":"2023-09-18T06:44:32Z","timestamp":1695019472000},"page":"1456-1466","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Bridging the gap: Survey highlights challenges and solutions in outreach and identification of people with inherited bleeding disorders"],"prefix":"10.1111","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6078-9109","authenticated-orcid":false,"given":"Juliana","family":"Hagembe","sequence":"first","affiliation":[{"name":"World Federation of Hemophilia  Montreal Quebec Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alain","family":"Baumann","sequence":"additional","affiliation":[{"name":"World Federation of Hemophilia  Montreal Quebec Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2029-677X","authenticated-orcid":false,"given":"Maria E.","family":"Santaella","sequence":"additional","affiliation":[{"name":"National Bleeding Disorders Foundation  New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9220-1840","authenticated-orcid":false,"given":"Thomas","family":"Sannie","sequence":"additional","affiliation":[{"name":"Association Fran\u00e7aise des H\u00e9mophiles  Paris France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine","family":"Lambert","sequence":"additional","affiliation":[{"name":"Cliniques Universitaires Saint\u2010Luc  Brussels Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anne Louise","family":"Cruickshank","sequence":"additional","affiliation":[{"name":"South African Haemophilia Foundation  Johannesburg South Africa"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carlos","family":"Gaitan\u2010Fitch","sequence":"additional","affiliation":[{"name":"Unidad y Desarrollo Hermanos con Hemofilia  Guadalajara Mexico"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ekawat","family":"Suwantaroj","sequence":"additional","affiliation":[{"name":"National Hemophilia Foundation of Thailand  Bangkok Thailand"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cesar","family":"Garrido","sequence":"additional","affiliation":[{"name":"World Federation of Hemophilia  Montreal Quebec Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Salome","family":"Mekhuzla","sequence":"additional","affiliation":[{"name":"World Federation of Hemophilia  Montreal Quebec Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2023,9,17]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41572-021-00278-x"},{"issue":"21","key":"e_1_2_10_3_1","first-page":"2067","article-title":"Von Willebrand's disease","volume":"375","author":"Leebeek FWG","year":"2016","journal-title":"Longo DL, editor"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.31.8.661-a"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.7326\/M19-1208"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2020003265"},{"key":"e_1_2_10_7_1","unstructured":"World federation of hemophilia report on the annual global survey 2021 [Internet].2022[cited 2023 Mar 28]. 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