The review explores how community-based groups (CBGs) support people affected by skin-related neglected tropical diseases (skin-NTDs).
We looked at existing research and expert insights to understand what works best in CBG models—focusing on self-care, mental health, livelihoods, and governance. Key findings highlight that while leprosy receives the most attention, there is a major gap in research on other skin-NTDs, especially in Africa.
Many CBGs struggle to connect with health systems and often lack sustainable funding, gender inclusion, and long-term impact strategies.
To bridge these gaps, we propose a best-practice framework to strengthen CBGs and call for further research to support a more holistic, inclusive, and sustainable approach across multiple skin-NTDs.
The findings of this paper have been transformed into a manual that is being tested out in Bangladesh, India and Ethiopia through our operational research project ‘UPLIFT’.
Community-based group (CBG) approaches can make a big difference in the lives of people affected by neglected tropical diseases (NTDs).
However, these kinds of support groups are often set up in different ways by different organisations, and this can cause confusion and inconsistency between countries and regions. While it’s important to adapt to local needs, there’s also a clear need for a more consistent approach that everyone can follow.
That’s why the UPLIFT project was created. It’s a joint effort to develop a clear, practical, and evidence-based way of setting up and running community support groups for people affected by NTDs. The model was shaped through collaboration with experts and people with lived experience, and the scoping review.
It brings together many important elements like self-care, mental health support, inclusion, community participation, and the structures needed to keep these groups going long-term.
A key idea behind UPLIFT is that people affected by NTDs shouldn’t just receive help—they should be at the centre of creating and leading the response. Their experiences and leadership are vital to making sure these groups truly meet people’s needs.
With UPLIFT, NGOs and communities have a clear guide to help them plan, deliver, and measure their work more effectively. It also makes it easier for different countries and groups to learn from one another.
In this way, UPLIFT supports global goals for ending NTDs by 2030—showing how strong, community-led support can lead to real, lasting change.
Read the scoping review. from Frontiers in Tropical Medicene Journal Volume 6 - 2025
Contributing authors include:
Becks Hill, Maria Del Mar Marais and Mijanur Rahman from Lepra
Ranji Kant Singh from Lepra Society
Laura Dean, India Hoptopf, Shareen Chowdhury from Liverpool school of Tropical Medicine
Guillermo Robert , Mary Ellen Sellers, Maneesh Phillip, Effect Hope
Constanze Vettel from German Leprosy and Tuberculosis Relief Association
Anil Fastenau from German Leprosy and Tuberculosis Relief Association, Department of Global Health, Institute of Public Health and Nursing Research and Heidelberg Institute of Global Health
Ahmed Bekere from German Leprosy and Tuberculosis Relief Association Ethiopia
