Haemophilia is a genetic condition affecting 1 out of 10 000 people around the world. The lack of diagnosis is one of the main health challenges for PWH, as only 25% of the global haemophilia patient population have been identified. 1 In Senegal, for example, a study reports a prevalence of 2.3/100 000 male births, accounting for only 11.6% of the expected figure in the country. 2 Very few studies have focused on haemophilia in sub-Saharan Africa, the epidemiological data being mainly obtained from Senegal, 2 South Africa, 3 Zimbabwe, 4 Nigeria, 5 Cameroon 6 and Ivory Coast.7,8 These studies highlight worrying trends as reported by Diop et al 2 who emphasize that most of the patients die very early in their childhood, during untreated haemorrhagic episodes due to the inaccessibility of factor concentrates replacement. Indeed, the life expectancy of PWH remains low, as the mean age of the patients in 2014 was 15 years in Senegal. 2 Prophylaxis is today the main goal of treatment, though prophylaxis access remains very limited in low-resource countries. Thanks to the World Federation of Haemophilia (WFH) humanitarian aid programme, 14 children were under prophylaxis in 2018 in Senegal.

This study aims to explore disease knowledge, beliefs, behaviours and concerns of PWH and carriers as a way to find adapted solutions to address the unmet needs.