The Nodding Syndrome Alliance 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.
Start date: 1 September 2019 | Proposed end date: 31 October 2025
Region: Africa
Language: English, Arabic
Lead institution: Amref Health Africa, CUAMM – Doctors With Africa, OVCI, Light For The World, Sudan Evangelical Mission
Location: Western and Central Equatoria States, South Sudan
Principal investigator / organizer: Jacopo Mattia Rovarini
Patient age: All ages
Type of project: Clinical, Community education, Advocacy, Stigma
Funding sources: Government, Foundation – Italian Agency for Cooperation and Development, The BAND Foundation and Apotheker Helfen
Project needs: Equipment, Funding, Medication, Data Analysis, Specialists for on-the-job training
Related publications:
- Evaluating epilepsy management in an onchocerciasis-endemic area: Case of Maridi, South Sudan, Seizure (2024)
- The fight to cure South Sudan’s mysterious neurological disorder, The Guardian (2024)
- Soudan du Sud: les ravages du mystérieux syndrome du hochement de tête, RFI (2024)
- Effect of onchocerciasis elimination measures on the incidence of epilepsy in Maridi, South Sudan: a 3-year longitudinal, prospective, population-based study, The Lancet (2023)
- Epilepsy Care in Resources-constrained Settings: The Nodding Syndrome Alliance experience in three clinics in Western Equatoria, South Sudan, Nodding Syndrome Alliance (2023)
- Preliminary data on clinical management from a multi-sectorial initiative addressing nodding syndrome and other forms of epilepsy in Western Equatoria, South Sudan, Nodding Syndrome Alliance (2023)
- Tackling onchocerciasis- associated epilepsy: New evidence and recommendations for policymakers, Nodding Syndrome Alliance (2023)
- Au Soudan du Sud, la difficile lutte contre le mystérieux « syndrome du hochement de tête », Le Monde Afrique (2021)
Contact: Jacopo Mattia Rovarini