Science communication for epilepsy Reducing social prejudice against patients through the PAHO/WHO/ILAE/IBE Strategy and Plan of Action for Epilepsy for the Americas and Carabbean.
Epilepsy is the most common neurological disease in the world. However, stigma and prejudice towards patients is still easily found in society, both in developed and developing countries. This paper aims to discuss the importance of scientific communication in breaking myths and assisting epilepsy patients in gaining more dignity in their daily lives. We present initiatives in the Americas addressing patients' human rights defense, as well as strategies in course on society awareness on epilepsy. Our main focus is on an empirical case: the E-Jaguar website (e-jaguar.org), created in 2012 by an unprecedented alliance involving PAHO/WHO and two civil societies of doctors and epilepsy patients (ILAE and IBE). It aims to provide trustworthy data, approved by the World Health Organization about epilepsy to patients in the Americas. It also offers information on epilepsy civil society organizations clustered by countries so that patients can find local assistance. The idea is to have an online platform that can bring patients, physicians and specialists together sharing experiences, in order to improve patients lives. We, the authors, are the ones responsible for the website's development from the beginning to now. This paper will refer to difficulties and successes in building this online tool that relies on scientific communication to spread accurate information about the disease.
Key words: epilepsy, science communication, human rights, E-Jaguar.
A copy of the full paper has not yet been submitted.