OBJECTIVES: Infantile hemangioma (IH) develops during the first weeks of life; it normally forms within 3to6 months, then regresses very slowly over a duration of 3 to 7 years. In complicated forms, it is possible to encounter haemorrhaging, necroses and ulcerations, infections and, more exceptionally, respiratory distress, cardiovascular shunt. To explore the handicap, in its largest sense, generated by IH using a questionnaire to express the burden on the daily life of the parents. METHODS: The questionnaire was developed following a strict methodological process, involving a multidisciplinary team incorporating various players (doctors, nurses, social workers) who are involved in the treatment of patients or who are specialised in the construction of questionnaires. A review of the literature and discussions with the families were conducted in order to identify the concepts related to the pathology. RESULTS: Exploratory assessments showed that the concept of burden could be structured around two main modules: assess the impact directly for the first-module. The consequences of HI on daily life, family and personal relationships, work, financial situation and psychological impact for the second-module. A third module focuses on the behaviour of the child; this module will evolve over time and depending on the analyses. Fifty-six preliminary items were identified following a first discussion. A first analysis managed to reduce these items to 36 whilst conserving the 3 modules but making it easier to use the analysis. CONCLUSIONS: The Hemangioma-Burden-Questionnaire will allow clinicians to better understand the impact and consequences of the pathology on the family. It will also allow the development of the burden to be monitored according to the rate of development of the illness and its treatment.It will also allow the families of the children to better defend their interest before the health authorities in terms of expenditure (medical or other) for which the part remaining their responsibility is increasing significantly.