References
- World Federation of Hemophilia. Report on the Annual Global Survey 2019. October 2020. Available from https://www1.wfh.org/publications/files/pdf-1806.pdf (accessed 23 August 2022).
- World Federation of Hemophilia. Report on the Annual Global Survey 2009. March 2011. Available from https://www1.wfh.org/publications/files/pdf-1428.pdf (accessed 23 August 2022).
- Noone D, Skouw-Rasmussen N, Lavin M, van Galen KPM, Kadir RA. Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium. Haemophilia 2019; 25(3): 468–474. doi: 10.1111/hae.13722.
- Di Michele DM, Gibb C, Lefkowitz JM, et al. Severe and moderate haemophilia A and B in US females. Haemophilia 2014; 20(2): e136–143. doi: 10.1111/hae.12364.
- Viprey M, Volot F, Falaise C, et al., on behalf of FranceCoag. Age at diagnosis is delayed in women/girls with haemophilia compared to men/boys: a FranceCoag report. Abstract MED-FP-031 (501). World Federation of Hemophlia Global Virtual Summit June 2020. Haemophilia 2020; 26(S4): 79. doi: 10.1111/hae.13941.
- Arya S, Wilton P, Page D, et al. “They don’t really take my bleeds seriously”: Barriers to care for women with inherited bleeding disorders. J Thromb Haemost 2021; 19: 1506–1514. doi:10.1111/jth.15311.
- Criado Perez C. Invisible Women: Exposing Data Bias in a World Designed for Men. 2019. London: Chatto & Windus.
- Government of Ireland. Period Poverty in Ireland. Discussion Paper. Period Poverty Sub-Committee, National Strategy for Women and Girls, 2017–2020. February 2021. Available from https://www.gov.ie/en/publication/264f4-period-poverty-in-ireland-discussion-paper-period-poverty-sub-committee-national-strategy-for-women-and-girls-20172020-february-2021/ (accessed 23 August 2022).
- Citla-Sridhar D, Sidonio RF Jr, Ahuja SP. Bone health in haemophilia carriers and persons with von Willebrand disease: A large database analysis. Haemophilia 2022 Apr 13. doi: 10.1111/hae.14565. Online ahead of print
- Canadian Hemophilia Society. CBDR – Canadian Bleeding Disorder Registry. MyCBDR. Available from https://www.hemophilia.ca/mycbdr/ (accessed 23 August 2022).
- Doncarli A, Demiguel V, Guseva Canu I, et al. FranceCoag: a 22-year prospective follow-up of the national French cohort of patients with inherited bleeding disorders. Eur J Epidemiol 2019; 34: 521–532. doi: 10.1007/s10654-018-0468-7.
- Renault NK, Howell RE, Robinson KS, Greer WL. Qualitative assessment of the emotional and behavioural responses of haemophilia A carriers to negative experiences in their medical care. Haemophilia 2011; 17(2): 237–45. doi: 10.1111/j.1365-2516.2010.02424.x.
- O’Mahony B. Electronic health records – the patient perspective. Abstract SPK026. Speaker Abstracts – Virtual Congress of the European Association for Haemophilia and Allied Disorders 2021, 3–5 February 2021. Haemophilia 2021; 27(S2): 13. doi: 10.1111/hae.14237.
- Chai-Adisaksopha C, Noone D, Curtis R, et al. Non-severe haemophilia: Is it benign? – Insights from the PROBE study. Haemophilia 2021; 27 Suppl 1: 17–24. doi: 10.1111/hae.14105.