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Website of the Tunisian XP Association

Monday 5 January 2009

Founded in 2008, the Association Tunisienne d’Aide aux Enfants Atteints de Xeroderma Pigmentosum aims at

  • Allowing affected families to be informed

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  • On disease and its advanced medical care.On how to care, photo protection and what are the measures to take in order to slow the progression of the disease
  • On how to prevent occurrence of new cases in the family.
  • Allow families to communicate with them, help them break the social isolation engendered by this disease and provide support, moral and material help if necessary.
  • Advise, assist and help parents and patients to the granting of disability card and receive the social security coverage among different agencies: Ministry of Social Affairs, CNAM, Mutual, insurance, ...
  • Allowing children to meet, exchange experience, to support each other, play, grow ....
  • Get a real government social care of this disease (repayments, schooling, recreation and culture ...)
  • Try to identify with doctors, researchers and professional solutions balancing protection and quality of life
  • In collaboration with the public, doctors and scientists, the association participates in the identification and prevention of disease
  • Help research in developing a gene therapy or other research programs in order to improve care, prevention and understanding of this pathology
  • Raising funds to carry out their mission

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Fondation René Touraine