Medical care, daily management and rehabilitation need particular knowledge and strategies, otherwise patients and caregivers’ lives become really “impossible”.

Since the number of cases is limited and information is scarce, this web site, edited by families, is intended to be a means of communication that can overcome national frontiers and the barrier of the different languages, and allows for the circulation of experiences, news, instruments, meeting dates and possible therapeutical news..

“News” section in different languages will be directly managed by families from different countries.

The other sections can be enriched with personal contributions and experiences of the boys who want to be on the web. Documents can be sent to: