Noma (cancrum oris) is a gangrenous disease that predominantly affects children aged 2-6 living in conditions of extreme poverty in Africa, Asia and Latin America. Noma starts in the mouth, spreading rapidly to surrounding facial tissues, destroying skin, muscles and bones. The lesion starts with an ulcerous gingivitis and an oedema of the face which very rapidly necrotizes. The loss of the necrotic parts will leave a facial “hole” which sometimes deprives the victims from having a human appearance (Pittet et al).

Estimated at 90 per cent, noma has one of the highest mortality rates (WHO). The majority of children die during the acute phases (oedema or necrosis) from complication of the disease (sepsis, broncho-aspiration pneumonia, septic embolism) or due to the associated extreme malnutrition. 

Survivors have significant aesthetic and functional sequelae: disfigurement, impairments in breathing, swallowing, speaking, vision and definitive mouth closure (Baratti-Mayer et al). Child and adult survivors are reported to suffer intense social isolation, stigmatisation and discrimination (Cismas/UN HRCAC).

While surgery is costly and complex, if diagnosed during the early stages, noma’s full onset is preventable and treatable with inexpensive intervention (rehydration, antibiotics, mouth rinses and nutritional support) (Pittet et al).

Institutionally, noma largely remains trapped in a ‘vicious circle’ of neglect perpetuated by a lack of accurate empirical data, a feeble advocacy focus, and governmental and intergovernmental inaction (Cismas/UN HRCAC; Srour et al). 

Over the last decades, some progress in the fight against noma and for its survivors has been achieved by experts in the field, non-governmental organisations, the World Health Organization, and some governmental agencies, including our project partners.

To build momentum for noma’s prevention, detection and treatment and the redress of human rights violations suffered by the disease’s survivors, 
the Noma Project will establish noma’s epidemiology & global burden, centre the voices of noma’s survivors and portray their realities, and evaluate the implications of the framing of noma as a human rights issue and neglected tropical disease.