Families from all over Europe are working together to defeat Lesch-Nyhan Disease

Lesch-Nyhan Disease (LND) is a rare condition that affects children at a very young age. Children with this disease get kidney stones, they cannot control their muscles, and they develop an irresistible urge to try to hurt themselves (self-injurious behaviour).

There is curently no cure for this disease.


In many countries, families have formed networks, support groups and associations in order to help each other, to create awareness about the disease and to promote and support scientific research.


In 2014, these groups are joining forces by setting up a European Federation.

If you are interested in helping us, please contact us: