Des objectifs clairs

Nous sommes tous bénévoles 

Informer, soutenir, aider, rassembler,… « Ensemble pour Lola et les enfants de la lune » a des objectifs clairs :

  • Aider les personnes atteintes du Xeroderma Pigmentosum et leur famille à vivre au mieux avec cette maladie ;
  • Leur permettre de se protéger dans tous les milieux fréquentés en prenant en charge, autant que possible, les frais nécessaires pour une prévention maximale ;
  • Soutenir et financer la recherche médicale concernant le Xeroderma Pigmentosum ;
  • Favoriser l’insertion sociale des personnes concernées par la participation à un camp ou à d’autres activités organisées en tenant compte de la maladie ;
  • Faire mieux connaitre le Xeroderma Pigmentosum tant dans le milieu médical que du grand public.


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