The alliance

Established in 2019, the Nodding Syndrome Alliance unites civil society organizations, research institutions and the Ministry of Health of the Republic of South Sudan in their commitment to address the neglected epilepsy epidemic in the country.

The Nodding Syndrome Alliance aims at:


Acting as a recognized topic-specific knowledge and advocacy platform, offering mid-to-long term technical and strategic guidance on Nodding Syndrome and other forms of epilepsy to its members as well as to the global community.


Facilitating the identification of suitable funding opportunities and promotion of relevant consortia within and beyond the alliance membership, to support relevant search initiatives as well as the provision of epilepsy care.

Currently, its membership includes:

The photos on this page are by Adrienne Surprenant