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Mannucci, PM. Back to the future: a recent history of haemophilia treatment. Haemophilia 2008; 14 Suppl 3: 10–18. doi: 10.1111/j.1365-2516.2008.01708.x.MannucciPMBack to the future: a recent history of haemophilia treatmentHaemophilia200814Suppl 3101810.1111/j.1365-2516.2008.01708.xOpen DOISearch in Google Scholar

Oldenburg J, Dolan G, Lemm G. Haemophilia care, then, now and in the future. Haemophilia 2009; 15 Suppl 1: 2–7. doi: 10.1111/j.1365-2516.2008.01946.x.OldenburgJDolanGLemmGHaemophilia care, then, now and in the futureHaemophilia200915Suppl 12710.1111/j.1365-2516.2008.01946.xOpen DOISearch in Google Scholar

Mocroft A, Ledergerber B, Katlama C, et al; EuroSIDA study group. Decline in the AIDS and death rates in the EuroSIDA study: an observational study. Lancet 2003; 362: 22–29. doi: 10.1016/s0140-6736(03)13802-0.MocroftALedergerberBKatlamaCEuroSIDA study groupDecline in the AIDS and death rates in the EuroSIDA study: an observational studyLancet2003362222910.1016/s0140-6736(03)13802-0Open DOISearch in Google Scholar

Darby SC, Kan SW, Spooner RJ, et al. Mortality rates, life expectancy, and causes of death in people with hemophilia A or B in the United Kingdom who were not infected with HIV. Blood 2007; 110: 815–25. doi: 10.1182/blood-2006-10-050435.DarbySCKanSWSpoonerRJMortality rates, life expectancy, and causes of death in people with hemophilia A or B in the United Kingdom who were not infected with HIVBlood20071108152510.1182/blood-2006-10-05043517446349Open DOISearch in Google Scholar

Vidovic N, Heilmeier A, Goldmann G, Niemann B, Brackmann HH, Oldenburg J. Demographic data from 1970–2006 of the Haemophilia Center Bonn. Haemophilia 2008; 14 Suppl 2: 121–158: 24PO23.VidovicNHeilmeierAGoldmannGNiemannBBrackmannHHOldenburgJDemographic data from 1970–2006 of the Haemophilia Center BonnHaemophilia200814Suppl 212115824PO23Search in Google Scholar

Plug I, Bom JG, Peters M, et al. Thirty years of hemophilia treatment in the Netherlands, 1972–2001. Blood 2004; 104: 3494–500. doi: 10.1182/blood-2004-05-2008.PlugIBomJGPetersMThirty years of hemophilia treatment in the Netherlands, 1972–2001Blood2004104349450010.1182/blood-2004-05-200815308570Open DOISearch in Google Scholar

Berntorp E, Petrini P. Long-term prophylaxis in von Willebrand disease. Blood Coagul Fibrinolysis 2005; 16 Suppl 1: S23–S26. doi: 10.1097/01.mbc.0000167659.23262.18.BerntorpEPetriniPLong-term prophylaxis in von Willebrand diseaseBlood Coagul Fibrinolysis200516Suppl 1S23S2610.1097/01.mbc.0000167659.23262.1815849523Open DOISearch in Google Scholar

Manco-Johnson MJ, Abshire TC, Shapiro AD, et al. Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia. N Engl J Med 2007; 357: 535–44. doi: 10.1056/NEJMoa067659.Manco-JohnsonMJAbshireTCShapiroADProphylaxis versus episodic treatment to prevent joint disease in boys with severe hemophiliaN Engl J Med20073575354410.1056/NEJMoa06765917687129Open DOISearch in Google Scholar

Coppola A, Tagliaferri A, Di Capua M, Franchini M. Prophylaxis in children with hemophilia: evidence-based achievements, old and new challenges. Semin Thromb Hemost 2012; 38: 79–94.CoppolaATagliaferriADi CapuaMFranchiniMProphylaxis in children with hemophilia: evidence-based achievements, old and new challengesSemin Thromb Hemost201238799410.1055/s-0031-130095422314606Search in Google Scholar

Franchini M and Mannucci P. Past, present and future of hemophilia: a narrative review. Orphanet J Rare Dis 2012; 7: 24. doi: 10.1186/1750-1172-7-24.FranchiniMMannucciPPast, present and future of hemophilia: a narrative reviewOrphanet J Rare Dis201272410.1186/1750-1172-7-24350260522551339Open DOISearch in Google Scholar

Ruiz, J. Sociological discourse analysis: methods and logic. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research 2009; 10(2): Art. 26. doi: 10.17169/fqs-10.2.1298.RuizJSociological discourse analysis: methods and logicForum Qualitative Sozialforschung / Forum: Qualitative Social Research2009102Art. 26.10.17169/fqs-10.2.1298Open DOISearch in Google Scholar

Hughes T, Brok-Kristensen M, Gargeya Y, et al. ‘What more can we ask for?’: an ethnographic study of challenges and possibilities for people living with haemophilia. J Haem Pract 2020; 7(1): 25–36. doi: 10.17225/jhp00151.HughesTBrok-KristensenMGargeyaY‘What more can we ask for?’: an ethnographic study of challenges and possibilities for people living with haemophiliaJ Haem Pract202071253610.17225/jhp00151Open DOISearch in Google Scholar

ICC/ESOMAR international code of market and social research. 2016. Available from https://www.esomar.org/what-we-do/code-guidelines (accessed 9 November 2020).ICC/ESOMAR international code of market and social research2016Available from https://www.esomar.org/what-we-do/code-guidelines (accessed 9 November 2020).Search in Google Scholar

The “Frankfurt Declaration” of ethics in social and cultural anthropology. Available from http://www.dgv-net.de/wp-content/uploads/2016/11/DGV_Ethics-Declaration_FINAL_1.11.2016-1.pdf (accessed 3 June 2019).The “Frankfurt Declaration” of ethics in social and cultural anthropologyAvailable from http://www.dgv-net.de/wp-content/uploads/2016/11/DGV_Ethics-Declaration_FINAL_1.11.2016-1.pdf (accessed 3 June 2019).Search in Google Scholar

Iphofen R. Research Ethics in Ethnography/Anthropology in Europe. Available from http://ec.europa.eu/research/participants/data/ref/h2020/other/hi/ethics-guide-ethnoganthrop_en.pdf (accessed 3 June 2019).IphofenRResearch Ethics in Ethnography/Anthropology in EuropeAvailable from http://ec.europa.eu/research/participants/data/ref/h2020/other/hi/ethics-guide-ethnoganthrop_en.pdf (accessed 3 June 2019).Search in Google Scholar

Principes généraux de la pratique de la sociologie (General principles of the practice of sociology). Available from http://www.test-afs-socio.fr/drupal/sites/default/files/congres09/FormCharte.html (accessed 3 June 2019).Principes généraux de la pratique de la sociologie (General principles of the practice of sociology)Available from http://www.test-afs-socio.fr/drupal/sites/default/files/congres09/FormCharte.html (accessed 3 June 2019).Search in Google Scholar

Association of Social Anthropologists of the UK and the Commonwealth (ASA). Ethical Guidelines for good research practice. Available from https://www.theasa.org/downloads/ASA%20ethics%20guidelines%202011.pdf (accessed 3 June 2019.Association of Social Anthropologists of the UK and the Commonwealth (ASA)Ethical Guidelines for good research practiceAvailable from https://www.theasa.org/downloads/ASA%20ethics%20guidelines%202011.pdf (accessed 3 June 2019.Search in Google Scholar

Goffman E. Stigma: Notes on the Management of Spoiled Identity. 1968. London: Penguin.GoffmanEStigma: Notes on the Management of Spoiled Identity1968LondonPenguinSearch in Google Scholar

Millen N, Walker C. Overcoming the stigma of chronic illness: strategies for normalisation of a ‘spoiled identity’. Health Sociology Review 2001; 10(2): 89–97. doi: 10.5172/hesr.2001.10.2.89.MillenNWalkerCOvercoming the stigma of chronic illness: strategies for normalisation of a ‘spoiled identity’Health Sociology Review2001102899710.5172/hesr.2001.10.2.89Open DOISearch in Google Scholar

Ferguson P, Walker H. ‘Getting on with life’: resilience and normalcy in adolescents living with chronic illness. International Journal of Inclusive Education 2014; 18(3): 227–40. doi: 10.1080/13603116.2012.676082.FergusonPWalkerH‘Getting on with life’: resilience and normalcy in adolescents living with chronic illnessInternational Journal of Inclusive Education20141832274010.1080/13603116.2012.676082Open DOISearch in Google Scholar

Potì S, Palareti L, Emiliani F, Rodorigo G, Valdrè L. The subjective experience of living with haemophilia in the transition from early adolescence to young adulthood: the effect of age and the therapeutic regimen. International Journal of Adolescence and Youth 2017; 23(2): 133–44. doi: 10.1080/02673843.2017.1299017.PotìSPalaretiLEmilianiFRodorigoGValdrèLThe subjective experience of living with haemophilia in the transition from early adolescence to young adulthood: the effect of age and the therapeutic regimenInternational Journal of Adolescence and Youth20172321334410.1080/02673843.2017.1299017Open DOISearch in Google Scholar

McAfee LA. Schools for haemophiliacs. Br Med J 1966 Sep 17; 2(5515): 704, 705. PMCID: PMC1943868.McAfeeLASchools for haemophiliacsBr Med J1966Sep1725515704705PMCID: PMC1943868.10.1136/bmj.2.5515.704-cSearch in Google Scholar

Britten MI, Spooner RJD, Dormandy KM, Biggs R. The haemophilic boy in school. Br Med J 1966 Jul 23; 2(5507): 224–8. doi: 10.1136/bmj.2.5507.224.BrittenMISpoonerRJDDormandyKMBiggsRThe haemophilic boy in schoolBr Med J1966Jul2325507224810.1136/bmj.2.5507.22419432014223065Open DOISearch in Google Scholar

Brodin E, Sunnerhagen KS, Baghaei F, Törnbom M. Persons with haemophilia in Sweden – experiences and strategies in everyday life. A single centre study. PLoS ONE 2015; 10: e0139690. doi: 10.1371/journal.pone.0139690.BrodinESunnerhagenKSBaghaeiFTörnbomMPersons with haemophilia in Sweden – experiences and strategies in everyday life. A single centre studyPLoS ONE201510e013969010.1371/journal.pone.0139690459219126431432Open DOISearch in Google Scholar

Barlow J, Stapley J, Ellard D. Living with haemophilia and von Willebrand's: a descriptive qualitative study. Patient Educ Couns 2007; 68: 235–42. doi: 10.1016/j.pec.2007.06.006.BarlowJStapleyJEllardDLiving with haemophilia and von Willebrand's: a descriptive qualitative studyPatient Educ Couns2007682354210.1016/j.pec.2007.06.00617904328Open DOISearch in Google Scholar

Boardman FK, Hale R, Gohel R, Young PJ. Preventing lives affected by hemophilia: a mixed methods study of the views of adults with hemophilia and their families toward genetic screening. Mol Genet Genomic Med 2019; 7: e618. doi: 10.1002/mgg3.618.BoardmanFKHaleRGohelRYoungPJPreventing lives affected by hemophilia: a mixed methods study of the views of adults with hemophilia and their families toward genetic screeningMol Genet Genomic Med20197e61810.1002/mgg3.618650301730838796Open DOISearch in Google Scholar

Diesen PS, Grut L. Identity and social challenges for persons with bleeding disorders: a gender and sex comparative approach. Scandinavian Journal of Disability Research 2017; 19: 69–77. doi: 10.1080/15017419.2015.1091034.DiesenPSGrutLIdentity and social challenges for persons with bleeding disorders: a gender and sex comparative approachScandinavian Journal of Disability Research201719697710.1080/15017419.2015.1091034Open DOISearch in Google Scholar

Peltoniemi A, Kyngäs H. Hemofiliaa sairastavien kokemuksia sairaudestaan ja sen kotihoidosta. Hoito-tiede 2003; 16: 111–20.PeltoniemiAKyngäsHHemofiliaa sairastavien kokemuksia sairaudestaan ja sen kotihoidostaHoito-tiede20031611120Search in Google Scholar

Groen WG, Takken T, van der Net J, Helders PJ, Fischer K. Habitual physical activity in Dutch children and adolescents with haemophilia. Haemophilia 2011; 17(5): e906–12. doi: 10.1111/j.1365-2516.2011.02555.x.GroenWGTakkenTvan der NetJHeldersPJFischerKHabitual physical activity in Dutch children and adolescents with haemophiliaHaemophilia2011175e9061210.1111/j.1365-2516.2011.02555.x21539696Open DOISearch in Google Scholar

Srivastava, A., Brewer, A., Mauser-Bunschoten, et al.; Treatment Guideines Working Group on behalf of the World Federation of Hemophilia. Guidelines for the management of hemophilia. Haemophilia 2013; 19: e1–47. doi: 10.1111/j.1365-2516.2012.02909.x.SrivastavaA.BrewerA.Mauser-BunschotenTreatment Guideines Working Group on behalf of the World Federation of HemophiliaGuidelines for the management of hemophiliaHaemophilia201319e14710.1111/j.1365-2516.2012.02909.x22776238Open DOISearch in Google Scholar

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