Paratonnerre

FIRES is an extremely rare epileptic syndrome (an estimated European prevalence of 1 / children and adolescents and an annual incidence of 1 / which affects children of school age. The acronym FIRES stands for Febrile infection-related epilepsy syndrome. This acronym ("fire" in French) was not chosen at random, it represents the devastating inflammation at work in the brain during the acute phase of the syndrome. At the age between 4 and 10 years, a few days after an ordinary febrile episode, seizures appear in a child hitherto perfectly normal, these attacks increase in frequency and duration until a state of refractory disease. This acute phase is followed by a chronic phase with drug-resistant epilepsy and cognitive impairment. Paratonnerre, created in July 2012 by parents after their child's illness, is the first association of parents concerning this syndrome and the only one in the world. Its objective is to promote better knowledge of this syndrome. The association aims to advance scientific understanding of the syndrome and to bring together the families of children and their support with FIRES (or DESC, NORSE, AERRPS) which are today dispersed. Together, we can share our experiences, act to raise awareness among researchers around this devastating syndrome, provide information to advance knowledge of the syndrome. Today, the association is in contact with around twenty families in France and around a hundred around the world. Paratonnerre also brings together a hundred members: mainly families and their supporters. The association's objective over the next 2 years is twofold- finance research projects to understand the syndrome - increase the support of the association beyond the first circle of families directly concerned and their relatives