Noma: Moving the neglected tropical disease research agenda forward

Noma is a devastating and often fatal disease that primarily affects young children living in extreme poverty. Beginning as a lesion in the mouth, it rapidly progresses to destroy soft and hard facial tissues. Without treatment, noma has a mortality rate of up to 90%.

Noma is preventable if children are well nourished and have access to quality health care including routine vaccinations. Survivors often experience severe facial disfigurement, difficulty eating and speaking, and long-term social stigma. The disease is mostly reported in Africa and Southeast Asia, however noma remains underreported and poorly understood.

In 2023, noma was officially recognised by the World Health Organization as a neglected tropical disease, marking a major step forward in global awareness and research prioritisation.

Understanding noma

Noma typically begins as a form of acute necrotising gingivitis before rapidly (within weeks) progressing into a gangrenous infection. Risk factors include the chid being aged two to five years, extreme poverty, chronic malnutrition, poor oral hygiene, and limited access to healthcare.

Despite its severity, the exact cause of noma is still not fully understood. It is likely the result of a complex interaction between microbial infection, weakened immunity, and environmental factors.

Early detection is critical. When identified in its initial stages, noma can be treated effectively with antibiotics, nutritional support, and improved hygiene. However, many cases are diagnosed too late, when extensive damage has already occurred.

The global challenge

Noma is one of the most neglected diseases in the world. It disproportionately affects vulnerable populations and has historically received limited attention from research, policy, and funding communities.

Challenges include:

A lack of reliable epidemiological data
Limited understanding of the disease’s underlying biology
Delayed diagnosis due to low awareness and access to care
Stigma and social exclusion faced by survivors
The diseases rapid progression, making it difficult to research.

The recent classification of noma as a neglected tropical disease is helping to address these gaps by increasing visibility and mobilising international efforts.

Noma research at Liverpool

Researchers at the University of Liverpool are at the forefront of efforts to better understand and tackle noma through interdisciplinary and international collaboration.

Liverpool’s work focuses on uncovering the biological mechanisms that drive the disease, particularly the interactions between microbial communities and the human immune system. This research is essential to developing earlier diagnostic tools and more effective prevention strategies.

Building on existing expertise, a newly funded international consortium led by the University of Liverpool is advancing research into noma. Supported by Hilfsaktion Noma e.V., the PathNoma alliance brings together leading partners including the Liverpool School of Tropical Medicine, ISGlobal, the CaixaResearch Institute, and Médecins Sans Frontières.

This collaboration combines clinical, microbiological, and public health expertise with on-the-ground experience in affected regions, ensuring that research is closely aligned with real-world needs.

The PathNoma programme will investigate the microbiology and immunopathology of noma in unprecedented detail. Ultimately, this work seeks to transform how noma is understood, prevented, and treated.

Dr Stuart Ainsworth, Senior Lecturer and Future Leader Fellow from the Department of Infection Biology and Microbiomes at the University of Liverpool, said: “Noma is a truly devastating disease that has afflicted humankind for millennia. Yet, despite its severity, it remains largely unknown and poorly understood. We already know that chronic malnourishment and poverty are major risk factors, but this significant funding will allow us to pinpoint which bacteria drive the disease, whether it’s caused by a single species or several acting together, and to understand its interaction with the immune response and why some children develop noma while others do not. With this knowledge, we can begin developing early screening tools.”

The recognition of noma as a neglected tropical disease, combined with new international funding and collaboration, marks a turning point in efforts to tackle this devastating condition. Through initiatives such as PathNoma, researchers at the University of Liverpool are contributing to a growing global movement to bring noma out of neglect and improve outcomes for some of the world’s most vulnerable children.