European patient representatives groups joining forces
against Lesch-Nyhan Disease

Our missions:

  • To promote international cooperation between families of patients suffering from Lesch-Nyhan disease.
  • To collaborate with doctors, scientists and researchers working on Lesch-Nyhan disease to help understand the disease and find an appropriate treatment.
  • To inform a larger public of the existence of Lesch-Nyhan disease and to ease access to the current knowledge about this rare disease.
  • To promote, defend, and facilitate the social integration of people suffering from Lesch-Nyhan disease.