Esso è rivolto ai genitori dei bambini affetti da questa malattia ed ai dottori che li seguono.

Lo scopo del sito è favorire lo scambio reciproco di esperienze ed informazioni, senza alcuna pretesa di rigore scientifico.

This website, which is purely informative, is relevant to a very rare genetic disorder, called Jeune Syndrome.

The website is addressed to the parents of children affected by this disease and to their doctors.

The website is aimed at making the information and experiences exchange easier, without any claims to being scientifically rigorous.

Some links which are present in the Italian version are missing in this version because inapplicable or useless.

Versione in italiano

English version