Website of the Tunisian XP Association

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

• Allowing affected families to be informed

• 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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