EDYCS Epilepsy Group, a unique and leading non-governmental organization in epilepsy in collaboration with VERDE Frontier Solutions Ltd (‘VERDE’) and other stakeholders organized a Validation Workshop marking the first collaboration with VERDE dedicated to gathering factual data on the level of awareness, perception and knowledge of epilepsy broken down into 3 major segments namely (1) General Public (2) Patients and (3) Parents of children suffering from epilepsy.
The validation workshop took place on Wednesday 13 September 2023 at Gold Crest Hotel in Quatre-Bornes. Members of the press, stakeholders from different ministries, EDYCS Epilepsy Group, and representatives of VERDE took part in the workshop.
Among the distinguished guests present were: Professor Farid Boumediene from Limoges University, Professor Pierre Marie Preux, Specialist in Tropical Epilepsy, the Chairperson of the SBM Foundation, Mr Basdeo Rajee, and Dr Amritraj Mohit Kumar Jeetun from the Ministry of Social Integration, Social Security and National Solidarity, Ms. Venna Pavaday, co-founder of VERDE Frontier Solutions Ltd and representatives of different ministries.
The workshop put forward major findings from the research study carried out by VERDE, which has, as main objectives, to (1) determine the level of awareness of epilepsy and its consequences amongst the general public as well as assess knowledge of epilepsy, level of acceptance and societal barriers from public perception (2) understand the gaps and extent of stigmatization from society and the work-life challenges, perspectives, and attitudes of companies and educational institutions towards patients (3) determine the main challenges for parents whose children suffer from epilepsy and their integration in society, and understand the main difficulties faced by these parents in caring for their children as well as the support available to them.
During the opening speech, the vice-president of EDYCS epilepsy group, Mr. Paramasiva Chengan addressed the participants present by introducing the purpose of the validation workshop and affirmed the initiatives and efforts undertaken by EDYCS epilepsy group in destigmatizing and organizing workshops to better sensitize the public on the subject of epilepsy. Later joined by the president of the EDYCS epilepsy group, Mr Youssouf Noormamode, who highlighted the importance of having support from the government and other stakeholders in handling the societal issues surrounding epilepsy. He expressed gratitude for the collaboration and partnership of stakeholders for their ongoing support.
The co-founder of VERDE, Ms. Venna Pavaday, on her part, spoke on the long track record of VERDE in carrying out research work relating to societal issues while collaborating with organizations locally, regionally, and internationally. She expressed her commitment to provide ongoing support to EDYCS Epilepsy group through further studies and by assisting stakeholders in the implementation of an action plan following the study.
The project lead of the Epilepsy Market Study, Sameena Motala, Senior Analyst at VERDE, presented the main findings of the study to the participants, and this was followed by a round table where all stakeholders got the opportunity to express their views on the study and on proposed actions.
