At Effect Hope, we are committed to breaking down barriers to NTDs, empowering communities, and creating lasting change. This commitment is powerfully embodied by Emmanuel Guyan Zaizay, National President of the Network of Persons Affected with Neglected Tropical Diseases (NTDs) in Liberia. Emmanuel’s journey is one of resilience, courage and vision — how stigma and setbacks can become a story of advocacy and leadership that drives change one voice at a time. Community leaders like Emmanuel are essential to transforming how health systems respond to NTDs, as people with lived experience are the most effective advocates for change.
Stigma, Pain and Healing: Emmanuel’s Journey
Emmanuel’s story had begun with years of struggle against Buruli ulcer, a neglected tropical disease that left him feeling isolated and stigmatized. For over a decade, he felt the shame of being excluded from social life, the embarrassment of visible symptoms, and the labels put on him due to community beliefs that he was cursed. But Emmanuel wasn’t going to let his condition define his life. He sought solutions through traditional and faith-based healers but saw no breakthroughs. It wasn’t until he arrived at a local hospital that he would learn the reality of his condition and get answers.
For a disease that had been ongoing for years, Emmanuel was surprised to see how he recovered within just six months of stepping foot in the facility. “I was kind of surprised,” he reflects. “For 11 years I believed this thing could not be treated in a hospital. People said it was an everlasting sore. But I was cured—and that was powerful.”
The care Emmanuel received reshaped his understanding of what was possible when a health system is equipped to respond to the needs of its people. He was inspired to turn his experience into action: giving others hope that healing is possible.
From Research to Experience: The Birth of a Network
The concept for a supportive network emerged when a research project, known as REDRESS (Reducing the burden of Severe Stigmatizing Skin Diseases), arrived in Liberia. A collaborative project co-led by Effect Hope and partners like the Liverpool School of Tropical Medicine, it focused on strategies to reduce stigma associated with NTDs. Emmanuel served as a Co-Researcher, and Ambassador for the project, serving on community advisory boards, training project participants and participating in data collection. Motivated by his past experience overcoming an NTD and the stigma associated with it; he understood the necessity of bringing affected individuals together.
This led Emmanuel to the idea of an independent organization, that would become known as the Network of Persons Affected with NTDs, a permanent body that would ensure that the voices of those affected could be heard collectively in Liberia and beyond.
Global Advocacy Through Lived Experience
Through opportunities to attend international conferences like the Neglected Tropical Disease NGO Network (NNN), Emmanuel gained connections, credibility, and confidence to share his journey in public settings. “Traveling to share my story was really great,” Emmanuel says. “It gave me momentum. The community began to trust me because I came back with experiences and knowledge. And I think that is what other organizations should prioritize—having persons affected included in these gatherings. Their voices heard globally is a great initiative.” Through the conversations he had sharing his story has not only helped reduce the stigma surrounding NTDs, but inspired others to believe that they, too, can recover and thrive. Standing next to global health experts and PhD holders, Emmanuel’s presence proved that lived experience matters just as much as academic expertise.
Emmanuel’s vision for the future centers on the belief that NTD elimination strategies must be shaped by those who have firsthand experience of the hardships of the disease. “When persons affected are involved in awareness, advocacy, capacity building, and planning, interventions become more effective,” he explains. “It is about us that the planning is for—so there is a need for us to be part of it.” Emmanuel is advocating for health systems to work in collaboration with those affected to help shape interventions and policies. This plan aligns with the WHO’s roadmap for 2030, ensuring that persons affected aren’t just beneficiaries, but decision-makers.
The Power of Grassroots and Global Collaboration
Grassroot organizations like Emmanuel’s thrive when supported in partnership. That’s why he calls on NGO’s, governments and donors to support his movement with financial support and strategic guidance. “We have a strategy,” he says. “We want to keep raising awareness for three years so that people who think these conditions are not treatable will hear the message. But we can’t do this by ourselves. We need support from partners, ministries, and governments to sustain our activities and amplify our impact.” Ultimately, Emmanuel believes sustainable advocacy to eliminate NTDs can only succeed when global partners and grassroot leaders come together, united for a shared purpose.
Partnership and Empowerment in NTD Advocacy
At Effect Hope, we are honored to partner with Emmanuel and the Network of Persons Affected with NTDs. His leadership is a reminder that empowerment, inclusion, and collaboration aren’t optional, but critical in NTD advocacy and system strengthening. Emmanuel isn’t just a survivor of Buruli ulcer; he is a leader shaping the future of global health where everyone affected is heard, seen, and supported. Together, we are building a movement where affected persons lead the way; stigma is dismantled, and hope becomes a catalyst for action.
