Nodding Syndrome Alliance

The NSA project is an initiative implemented by a consortium of local and international organization and it aims at responding to the cross-sectoral needs of people with epilepsy (especially with Nodding Syndrome), as well as of their families and communities in the targeted locations in South Sudan. Although priority is granted to the provision of clinical care to people with epilepsy, the project also includes activities concerning the promotion of food security, better livelihood, school reintegration, awareness creation and advocacy at local and national level. Since its inception the project has established 3 epilepsy clincics and engaged more than 70 community volunteers for patients' home-based follow-up, to the benefit of over 2,500 people with epilepsy / Nodding Syndrome.

Project Status: Ongoing
Start Date: September 1, 2019
Proposed End Date: August 31, 2022
ILAE Region: Africa
Language(s): English, Arabic
Location: Western and Central Equatoria States, South Sudan, Amref Health Africa, CUAMM - Doctors With Africa, OVCI, Light For The World, Sudan Evangelical Mission
Principal Investigator / Organizer: Jacopo Mattia Rovarini
Contact Person: Jacopo Mattia Rovarini,
Patient Age: All Ages
Project Type(s): Clinical, Community Education, Advocacy, Stigma
Funding Source(s): Government, Foundation (Italian Agency for Cooperation and Development, The BAND Foundation)
Project Need(s): Funding, Medication, Other (Data Analysis, Specialists for on-the-job training)
Publications Associated with the Project: n.a.