National epilepsy movement in Brazil

Arquivos de Neuro-Psiquiatria

Paula T. Fernandes²  Ana L.a. Noronha²  Josemir W. Sander¹  Li M. Li² 

[1] ,UNICAMP Faculty of Medicine Department of NeurologyCampinas SP ,Brazil

关键词: national movement;    epilepsy;    patients’ associations;    movimento nacional;    epilepsia;    associações de pacientes;   

DOI  :  10.1590/S0004-282X2007001000009

来源: SciELO

【 摘 要 】

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.

【 授权许可】

CC BY   
 All the contents of this journal, except where otherwise noted, is licensed under a Creative Commons Attribution License