OBJECTIVES: To explore the handicap, in the largest sense, generated by ichthyosis using a questionnaire to express the burden of the illness on the daily life of patients and their family, in order to anticipate and treat it more effectively. 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 and caring for their families in order to guarantee its credibility and reliability. A review of the literature and discussions with the children and their 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 5 components: feeling of pain, daily life, family and personal relationships, work and psychological impact. 96 preliminary items were identified at the end of the first discussion. A first analysis managed to reduce these items to 40 whilst conserving the 5 components but making it easier to use the analysis. The creation of a “child module” aimed at children who are able to provide answers independently proved necessary CONCLUSIONS: Chronic pathologies such as ichthyosis, which remains a rare and incapacitating illness, are difficult to assess by clinical or quality of life aspects alone as their impact can be multidimensional. Although there is no specific quality of life questionnaire, several existing questionnaires attempt to assess one or other of these components; our questionnaire entitled “Family Burden Ichthyosis” takes them all into consideration in order to explain every angle of the handicap generated.