Noma, The Neglected Disease. An Interdisciplinary Exploration of Its Realities, Burden and Framing

Noma (cancrum oris) is a gangrenous disease that predominantly affects young children living in conditions of extreme poverty in Africa, Asia and Latin America. Noma starts in the mouth, spreading rapidly and destroying skin, muscles and bones. While surgery is costly and complex, if diagnosed early, Noma’s full onset is preventable and inexpensive to treat. Yet, the majority of children likely do not receive medical attention or receive it too late to save their faces and often their lives. Estimated at 90%, Noma has one of the highest mortality rates. Child and adult survivors suffer significant aesthetic and functional after-effects and are reported to go through intense social isolation, stigmatisation and discrimination.

The project seeks to address a range of questions concerning this issue, among which the following:

– What is the epidemiological evidence and global burden of Noma?

– What are the key risk factors of Noma?

– Does the framing of Noma as a cause and effect of human rights violations contribute to greater awareness and action amongst stakeholders?

The interdisciplinary international research team consists of world-renowned experts in the fields of Noma, epidemiology, global health, and human rights law, experienced field practitioners and a doctoral student. We will draw on a mixed-method cross-disciplinary approach to research, to establish Noma’s epidemiology and global burden, to portray the experiences of child and adult Noma survivors, and to evaluate the implications of the framing of Noma as a human rights issue and neglected tropical disease (NTD). The case study contexts are Burkina Faso, Laos, Niger and, taken together, Europe and North America.

To generate academic and social impact at local, national and international levels through the inclusion of Noma in the WHO list of NTDs, the research team relies on strong partnerships and collaborations with non-, inter- and governmental key stakeholders.