OBJECTIVES: Ichthyoses form a group of ailments for which the main part of treatment aims to reduce hyperkeratosis and to control sensory, articular and psychological complications. In infants, dermatologists do not restrict their treatment to the cutaneous involvement, but endeavour to prevent the consequences of these severe and obvious afflictions for the future of these patients.   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 five components: feeling of pain, daily life, family and personal relationships, work and psychological impact. Ninety-six 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. "Family Burden Ichthyosis" takes them all into consideration in order to explain every angle of the handicap generated