Association of ED and Clefts, genito-urinary malformations….)

  • Specific challenges associated with the recognition of the condition

Clinical heterogeneity

  • Specific challenges associated with the diagnosis

Possible surgical treatment of extracutaenous mainefestations. High risk of definitive alopecia

  • Specific challenges associated with the treatment

Pluridisciplianry approach: Dentists, ENT specialists, Cardiologists, Surgeons are mandatory

  • Specific challenges associated with care of these patients over their lifespan – Quality of life issues – Gaps accross the care

Few follow-up at adulthood

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