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National epilepsy movement in Brazil

DOI: 10.1590/S0004-282X2007001000009

Keywords: national movement, epilepsy, patients? associations.

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Abstract:

purpose: to establish a social network of epilepsy lay organization in brazil to provide advocacy for people with epilepsy and eventually form a powerful national epilepsy movement. method: we actively searched for any associations, support groups or organizations related to epilepsy in the country by personal contacts, internet search and by telephone search. contact was then established with any entity found. results: the first meeting was held in campinas in march 2003, and was attended by 270 people, including many people with epilepsy, members of all eleven epilepsy associations found, health professionals and representatives of the brazilian chapters of ibe and ilae and the brazilian ministry of health. this first meeting resulted in a national movement expressed every year through the national week of epilepsy and national meeting of lay associations. discussion: this strategy, developed by aspe, was simple and effective, and in a very short time a national movement was active. these actions could be reproduced in any country developing a campaign against epilepsy. it is important to consider that this is a process of empowerment, thus people with epilepsy need to take actions into their own hands and to be active participants.

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