Since 1996, inside the Association for Rare Diseases Mauro Baschirotto, a group of Italian families with children affected by Lesch-Nyhan Syndrome has been constituted. 
Actually there are more of 30 families with children affected by Lesch-Nyhan disease, who are from 1 to 45 years old.
The group supports the research for a therapy through initiatives linking up with the Association for Rare Diseases. It promotes the information and experience exchange among families in order to manage this difficult disease in a better way.
The group relies on BIRD for research and diagnosis.
Research on Lesch-Nyhan Disease in Italy (pps)
An important initiative that supports research is the edition of the book "An (Im)Possible Life" (1997) in which a mother tells the story of Michele, her child affected by LND.
The book "The Legend of Father Jacopo"(2008) is another publication supporting research: it is a tale suggested by Beck's article "Jacobus de Voragine(1230-1298): First to Describe a Lesch-Nyhan Syndrome"(Eur J Pediatr Surg2 1992-355-356)
. 
If you want to contact us, click on
famlnd@webst.it
|