| Lesch-Nyhan Syndrome |
|
Lesch-Nyhan Syndrome is a very rare disease that has severe implications on affected people and their families life.
Lesch-Nyhan Syndrome is a very rare disease that has severe implications on affected people and their families life.
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..
|
| |
| Books, thesis and articles |
 |
| In this section you can download theses, books and articles on the Lesch-Nyhan syndrome.
|
| |
| Reserved Area |
Reserved Area for the families. Please enter your username and password.
|
| |
|
|
| Initiatives |
 |
LND AND TOR X 2021
HOLD MY HAND, HOLD IT TIGHT IN THIS TOUGH LIVING
LND Famiglie Italiane are families in which one or more Lesch-Nyhan patients live. They are parents, brothers or sisters who live daily with the battle that their relatives endure from birth, with a ferocious rare genetic disease that forces them... |
|
 |
100 years of running
Tor des Geants 2017, the hardest and most fascinating endurance trail running in the world, is back from 10 to 16 of September. The race is 210 miles, to be completed in 150 hours, with an altitude range of 82.000 feet,... |
|
 |
The Western States 100-mile Endurance Trail
On June 25th Federico brought along the LND emblem in USA at the Squaw Valley start of one of the most fascinating and important trail in the world: the Western States 100-mile Endurance Trail.
Federico not drawn for a bib, supported, as a crew member, one... |
|
|
| |
|
|
| Latest News |
[ May 8th and 9th, 2020 ]
International Workshop Lesch-Nyhan Action 2020
The European Federation Lesch-Nyhan Disease (LNDE), the French and Italian patient representatives groups Lesch-Nyhan Action (LNA) and LND Famiglie Italiane are happy to invite you to our:
International Workshop - Lesch-Nyhan Action 2020
|
[ 1st March 2014 ]
Rare disease day 2014
Join together for Better Care
The no-profit Association “LND Italian Families” (LND Famiglie Italiane Onlus) will celebrate the Rare Disease Day in Saronno presenting the fairy tale book “Prince Michele” , a fable written by Michele, a young man affected by Lesch-Nyhan... |
|
| |
|
