In the heart of India’s rural landscapes, a quiet revolution is reshaping the way the world ad[1]dresses neglected tropical diseases (NTDs).
As we come together to mark World Leprosy Day on Sunday 26 January, we are reminded that leprosy remains a symbol of stigma and despair for millions. It continues to cast a shadow over these communities, robbing individuals of their dignity and opportunities. Yet, amidst these challenges, hope rises—not from the halls of global summits but from the villages where community members are stepping forward as changemakers.
For over a century, Lepra has been at the forefront of addressing diseases like leprosy. With a legacy of over 100 years, this organisation has mastered the art of listening to communities, empowering them, and building partnerships to overcome adversity. Today, Lepra is dismantling the barriers that keep communities in the shadows of stigma and exclusion.
A Network of Empowerment
At the core of Lepra’s work lies an unwavering belief in the power of partnerships. Through Community-Based Groups (CBGs) and federations, Lepra has created networks that do far more than deliver healthcare. These groups become lifelines, offering support, advocacy, and hope to those affected by NTDs. Global research affirms the effectiveness of such grassroots models, but it’s Lepra’s on-theground experience that transforms theory into reality.
In these partnerships, the human spirit shines brightest. Social recognition and deeply held values motivate ordinary people to do extraordinary things. Volunteers, often driven by their own experiences with NTDs, become trusted guides in their communities. By recognising their contributions, Lepra sustains their engagement and amplifies their impact.
Building Bridges of Capacity While motivation is vital, volunteers need tools, training, and a clear sense of purpose. Lepra’s training programmes equip them with the skills to educate, reduce stigma, and advocate for their communities. These champions of change lead and embody a model of empowerment that aligns with the best global practices.
Breaking Barriers, Transforming Perceptions
For centuries, leprosy has carried the weight of myths and misconceptions. Tackling this stigma requires more than medicine; it demands storytelling. Lepra’s federations and CBGs create platforms where affected individuals share their journeys. These stories challenge stereotypes and ignite empathy, reshaping perceptions one narrative at a time. Advocacy becomes personal, policies become inclusive, and communities become stronger.
While bureaucracy and systemic neglect often compound the challenges faced by marginalised groups, Lepra’s federations step in as intermediaries, bridging the gap between individuals and local authorities. By advocating for social entitlements and inclusive policies, they ensure that the voices of the vulnerable are heard and acted upon.
UPLIFT: A Blueprint for Sustainability
Among Lepra’s transformative projects is UPLIFT, a researchdriven initiative designed to create scalable and sustainable Community-Based Groups (CBGs) that integrate self-care, stigma reduction, and community engagement. Spanning India, Bangladesh, and Ethiopia, the project operates with the overarching goal of empowering individuals affected by leprosy and other stigmatising skin-NTDs to lead inclusive, fulfilling, and transformational lives.
The initiative follows a structured progression, beginning with establishing foundational relationships, building trust and capacities, integrating into the community through advocacy, and fostering pathways for economic empowerment.
Key objectives of the UPLIFT study include improving the quality of life for CBG members, fostering societal acceptance, and enhancing empowerment and ownership among participants. Each stage of the programme is meticulously planned, with defined milestones and monitoring tools developed in partnership with renowned research institutions.
The programme leverages a robust Progress Measurement Framework to evaluate its effectiveness, focusing on inclusion, improved health outcomes, and adaptability. By assessing how well it engages communities, fosters improved physical and mental health, and adapts to local needs, UPLIFT offers a model for enduring impact. Evaluations consider how successfully the programme reduces stigma, promotes self-efficacy, and integrates into community structures, ensuring it continues to function even without direct external support. This holistic approach highlights UPLIFT’s commitment to creating inclusive, scalable, and sustainable solutions.
Lessons for the World
The implications of this work extend far beyond India. Lepra’s model illustrates that community-driven health interventions are transformative. When local voices are elevated, strategies become culturally relevant, accessible, and sustainable. Health outcomes improve, societal impact deepens, and change becomes enduring.
From leprosy to lymphatic filariasis, the blueprint Lepra has created resonates globally. It’s a call to action for governments, NGOs, and donors to invest not just in programmes, but in people—to prioritise partnerships and progress over quick fixes.
As India addresses the challenges of NTDs, the work of grassroots organisations like Lepra offers a roadmap for hope. These initiatives remind us that overcoming diseases isn’t just about medicine; it’s about humanity. The world must take note, not just to tackle disease but to also foster a future where resilience and dignity are the norm, not the exception.
To mark World Leprosy Day, Lepra is inviting supporters to host their own ‘Life-Changing Tea’ event, to raise awareness and funds to help even more people like Astan (pictured). With support from Lepra’s UPLIFT Project, Astan recovered from the impact of leprosy and now supports countless people affected by leprosy thanks to his leadership of his local federation and CBG. For more information and to get involved visit:
