The care of a child presenting a variation in genital development is ensured after consultation of the multidisciplinary teams of the specialised centres of reference for rare diseases, under the conditions laid down inarticle L. 1151-1. This consultation establishes the diagnosis as well as the possible therapeutic proposals, including therapeutic abstention, and their foreseeable consequences, in application of the principle of proportionality mentioned inarticle L. 1110-5. This information and the opinion resulting from the consultation are recorded in the child’s medical file. The team at the centre of reference responsible for the child’s care provides full information and appropriate psychosocial support for the child and his or her family and ensures that they have the time they need to make an informed choice.
When the diagnosis is announced, a member of the multidisciplinary team at the centre providing the child’s care informs the holders of parental authority of the existence of associations specialising in providing support for people with a variation in genital development and, where applicable, of the possibility of accessing a fertility preservation programme in application ofarticle L. 2141-11.
The consent of the minor must be systematically sought if he/she is capable of expressing his/her wishes and participating in the decision.