Leprosy Mission Southern Africa

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How Community-Based Groups Can Improve the Lives of People Affected by Skin NTDs

community-based-group
A recent study has highlighted the valuable role that community-based groups (CBGs) can play in helping people with skin-related neglected tropical diseases (NTDs) such as leprosy.1

About Skin NTDs

NTDs affecting the skin can have serious long-term consequences, like physical disfigurement or disability, loss of income, mental distress and social stigma. Skin NTDs are one of the top 10 causes of disability and the third most common cause of illness globally. Examples of skin NTDs include leprosy, lymphatic filariasis and cutaneous leishmaniasis.1

Defining Community-Based Groups

The WHO defines CBGs as “informal groups of people who come together to share common problems and support each other. They can address health issues, emotional needs and depression, social discrimination and livelihoods.” CBGs are also called self-care groups or self-support groups.2

The Role of Community-Based Groups

CBGs are an important way of delivering sustainable and compassionate care to people affected by skin NTDs.1,2 

A report by the WHO outlines ways of empowering people affected by skin NTDs at the community level. The process of empowerment requires support from families and communities as well as social systems.2

Health:

• Knowledge to suspect and seek diagnosis of skin NTDs and complications

• Timely access to diagnosis and management of complications including rehabilitation

• Timely access to referral services

• Participation in self-care and self-support groups

Mental wellbeing:

• Have a support network and peer counsellors

• Family support and inclusion in family activities

• Opportunities to participate in activities

• Timely referral to specialist services when needed

Society:

• Improved knowledge, attitudes and behaviours towards persons affected by skin NTDs

• Stigma-free care from traditional or religious healers and health professionals

• Family and community support

• Participation in family, community and political life

Livelihood:

• Education or vocational training

• Formal and informal work

• Financial support

• Technical support

• Assistive technology and workplace adaptation

• Access to basic human needs

CBGs can play an invaluable role in supporting and empowering people impacted by skin NTDs. However, there is still much work needed to make CBGs more sustainable, integrated and equitable.1,2

For example, women and girls affected by skin NTDs face higher rates of stigma and mental health issues. This is combined with lower educational attainment, less decision-making power and less socioeconomic power. All these barriers make it more difficult to participate in CBGs. More research is needed to find the best ways to bring intersectional, gendered considerations to the fore within CBG models.1

The Leprosy Mission is involved in setting up many CBGs in Southern Africa, in order to help improve quality of life for people affected by the disease.

More information:

• Read the study: Community-based models for neglected tropical diseases affecting the skin

• Read the WHO’s strategic framework for integrated control and management of skin-related NTDs

 

References: 

1. Hotopf I, Chowdhury S, Robert G, et al. Community-based models for neglected tropical diseases affecting the skin: A scoping review. Front Trop Dis. 2025;6. doi:10.3389/fitd.2025.1544842.

2. Ending the neglect to attain the sustainable development goals: A strategic framework for integrated control and management of skin-related neglected tropical diseases. Accessed July 26, 2025. https://www.who.int/publications/i/item/9789240051423.