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
Ichthyosis Awareness Month 2019 : more than ever needed