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

How can raising awareness, better prevention and treatment help individuals suffering from Noma, the “neglected disease”?

Project Summary

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.

Research Team

Emmanuel Kabengele Mpinga
Coordinator
University of Geneva

Mirko Winkler
Co-Coordinator
Swiss Tropical and Public Health Institute, Basel

Ioana Cismas
Co-Coordinator
University of York, UK

Denise Baratti-Mayer
Principal Member
University of Geneva

Peter Steinmann
Epidemiologist
Swiss Tropical and Public Health Institute, Basel

Marie-Solène Adamou Moussa-Pham
Principal Member
University of Geneva

Margaret Leila Srour
Principal Member
Health Frontiers Laos

 

Alice Trotter
Principal Member
University of York, UK

Emilien Jeannot
Associated Member
University of Geneva

Gabriel Alcoba
Associated Member
Geneva University Hospitals

Bernardino Fantini
Associated Member
University of Geneva

Moubassira Kagone
Associated Member
Centre de Recherche en Santé de Nouna, Burkina Faso

Status

ongoing

Disciplines

Themes

Regions

Countries

Burkina Faso, Niger, Laos, United States of America, Europa

Host Institution

Coordinator

Year