Defining the Noma Research Agenda

Swiss TPH Hybrid Symposium

Restoring dignity — Only complicated plastic surgery can help affected children in the long term. 4-year-old Maryam has already undergone four operations, most recently a skin graft. (Photo: Claire Jeantet, Fabrice Caterini/Inediz)

Noma is a devastating disease that mainly affects children living in extreme poverty. If not treated at an early stage, up to nine in ten people die from noma. Those who survive often suffer life-long disabilities and stigma due to disfigurement.

Invisible for centuries, the World Health Organization officially recognised noma as a neglected tropical disease in December 2023. Using this momentum of increased global attention, we now want to bring together experts and stakeholders from different fields to set a common noma research agenda. Topics will include:

Integration of noma surveillance and treatment in established disease control programmes
Perspective of noma survivors in shaping research
Noma surveillance and prevention, including the role of nutrition
Population awareness and early detection
Physical and mental well-being of people affected by noma

Join our symposium and help us unite efforts to better understand, prevent and treat noma.

The symposium is co-organised with Elysium, the first noma survivors’ association.

9:30 Registration and welcome coffee (9:55 virtual check-in)

Moderator: Marianne Comparet, Director, International Society for Neglected Tropical Diseases
10:00	Welcome and Setting the Stage, Jürg Utzinger, Director, and Anaïs Galli, Scientific Collaborator, Swiss TPH
10:15	The Role of Swiss Development Cooperation in Tackling NTDs, Erika Placella, Head of the Global Programme Health, Swiss Agency for Development and Cooperation
10:30	Two Decades of Noma Research and Where do We Stand Today, Denise Baratti-Mayer, Associate Physician, Reconstructive and Aesthetic Surgery, University Hospital of Geneva
10:50	The Skin NTD Strategy of the WHO, Daniel Argaw Dagne, Unit Head, Prevention, Treatment and Care, Department of Control of Neglected Tropical Diseases, World Health Organization
11:05	Panel: Survivors’ Perspectives, Mulikat Okanlawon, President and Co-Founder, and Vava Muandane, Member, Elysium Noma Survivors Association; Marta Ribes, Predoctoral Fellow, Barcelona Institute for Global Health; Maria Guevara, International Medical Secretary, Médecins Sans Frontières; Claire Jeantet, Filmmaker, Inediz / Consultant, Elysium Noma Survivors Association
11:50	Introduction to Designing an NTD Research Agenda, Peter Steinmann, Unit Head, Diseases and Programmes, Swiss TPH
12:00	Lunch Break (60 minutes)

13:00	Break-out Groups - Brainstorming and Drafting the Agenda
	Insights into Noma for Newcomers, Mark Sherlock, Health Programmes Manager, Médecins Sans Frontières (Seminar Room 4 and streaming)
	Noma Surveillance and Prevention, Manuel Hetzel, Unit Head, Health Interventions, Swiss TPH (Seminar Room 5)
	Physical and Mental Well-being of People Affected by Noma, Emmanuel Kapengele Mpinga, Head of Division of Health and Human Rights, Institute of Global Health, University of Geneva (Seminar Room 6)
	Noma Stages and Re-Constructive Surgery, Denise Baratti-Mayer (Meeting Room 241)
	Microbiological and Therapeutic Aspects of Noma, Philippe Guérin, Director, Infectious Diseases Data Observatory, University of Oxford (Meeting Room 291)
14:45	Coffee Break (30 minutes)

Moderator: Peter Steinmann
15:15	The Way Forward: Brainstorming Outcomes and Discussion
16:30	The Big Picture, Thi Hanh Cao, External Relations Director, Drugs for Neglected Diseases initiative
16:45	Closing Words, Jürg Utzinger
17:00	End of Event