Organisation

LND Famiglie Italiane Onlus City: Genova Phone : +393387953875

Our Association LND Famiglie Italiane Onlus promotes real integration for people with Lesch-Nyan disease (LND). They are in most cases very sociable people, able to build strong relations with people around them, but such characteristics are not always fully developed in today's social contexts. Families with children or grown-ups who carry the syndrome have very special needs, often not met by social services planning assistance for more common disabilities.
The Association’s commitments are in raising awareness and working with public and private health and social assistance agencies. The goals of the Association are thoroughly explained in our Charter (access from :  http://www.lesch-nyhan.eu); democracy is a  key principle, as in all ONLUS's, and the composition of all the directive organisms is on electoral basis.
For the patients’ families to be part of the Association is a way to come out of the isolation that the sheer rarity of the symptoms may induce, and to share experiences, feelings and information. For volunteers, it is a way to increase families potential, to help raise awareness on the condition and to support initiatives.
We wish that people with Lesch-Nyan may remain very few, but we also hope that the members of the Association may become many and very active.

The Association organizes medical-scientific meetings on LND for clinicians, researchers, families, care-givers etc. (Genova, 2012; Torino, 2013), and meetings for families. Teleconference self-help meetings on agreed issues started in april 2012.

All members will be able to find a meeting point in the website, through the registered members area, find proceedings of the assemblies and thus be always present to the life of the Association

In 2014 the association joined the LND*E Lesch-Nyhan Disease European Federation :http://www.lnde.org/