By Emmanuel Zaizay, Jerry Kollie, Emerson Rogers, Wede Seekey Tate, Tiawanlyn G. Godwin-Akpan and Shahreen Chowdhury

Amidst the lush surroundings of Ganta, Nimba County, a key meeting was held on July 4th 2024 to establish a nationwide network for persons affected by Neglected Tropical Diseases (NTDs) in Liberia. The objectives of the meeting included:
- Raising Awareness: The primary goal was to raise awareness about the importance of establishing a cohesive network among persons affected by NTDs across Liberia.
- Mobilizing Ambassadors: Participants were encouraged to become ambassadors for the network, promoting its goals and advocating for improved support and recognition of those affected by NTDs.
- Inclusive Documentation: Discussions centred on shaping the necessary documentation for the network, ensuring it reflects the needs and perspectives of those affected across the 5 health regions of Liberia.
- Identifying Headquarters: Delegates deliberated on potential locations for the network’s headquarters, aiming for accessibility and cost-effectiveness.
- Establishing Governance Structures and Leadership: An interim organising leadership committee was established to guide initial efforts until formal incorporation. This committee included roles such as chairperson, co-chair, secretary, chaplain, and treasurer, representing different geographic regions.
- Planning for County Involvement: Plans were laid out to extend the network’s reach to all counties in Liberia. Participants from the initial meeting pledged to mobilise their communities, ensuring representation and engagement.
Meeting Highlights
The event officially started with an opening prayer, followed by welcome remarks from Abenego S Wright, the NTD focal person from the host County Health Management Team (Nimba County). These remarks emphasized the significance of the meeting and the collective effort needed to support persons affected by NTDs in Liberia. A round of introductions then followed; over 40 participants attended including peer support group leaders, persons with lived experiences from across the 15 counties of Liberia, and representatives from the Ministry of Health NTD Program, Nimba County Focal Person, NUOD (National Union of National Union of Organizations of the Disabled), AIFO-Liberia (Italian Association Amici di Raoul Follereau, ALM (American Leprosy Mission) and the Liverpool School of Tropical Medicine, UK.

Emerson Rogers, NTD National Coordinator for Case Management NTDs, provided an overview of the network’s purpose and outlined the objectives for the day. Emerson described the journey to creating the peer support groups which started through the participatory and person-centred approaches of REDRESS, with the six peer support groups across the three REDRESS intervention counties (Margibi, Grand Gedeh and Lofa). This also includedthe role of persons affected as part of study design, e.g. as a co-researcher, informing intervention design and taking part in participatory methods (see ten steps). At the request of persons-affected, there is now the need to move beyond these REDRESS initiated six groups, to scale these further into an independent and sustainable network established, owned and led by persons affected from across all 15 counties.
“People of the same kind, meeting together and supporting each other “
Emerson Rogers, National Coordinator for Case Management of NTDs, Ministry of Health
Emerson addressed the profound challenges faced by individuals affected by skin NTDs, such as stigma, isolation, and adverse mental health effects. He emphasized the critical importance of uniting all voices to tackle these issues and advocate for greater understanding and support. A resounding thanks and acknowledgement was given to Emmanuel Zaizay, peer advocate, support group leader and REDRESS co-researcher for his dedicated work in mobilising, advocating and working towards strengthening a network for persons affected by NTDs.

We were honoured to have the presence of representatives from established networks in Liberia, including Jonathan S. Davis, AIFO-Liberia and Pastor Peter B. K. Flomo, President of NUOD. Jonathan Davis and Peter B.K Flomo shared their experiences, offering powerful and practical insights and guidance on how their organisations were founded by individuals with lived experience who united to become agents of change. As of today, NUOD and AIFO-Liberia are long established organisations that have had significant impacts on improving quality of life and driving large-scale community driven impacts across Liberia, through targeted healthcare, education, and economic empowerment initiatives. Pastor Peter B. K. Flomo described the steps required for registration and the need for an article of incorporation, to identify the network goal, vision, objectives, motto, and slogan.

Jerry Kollie emphasised the need for the network to be collectively decided and led by persons affected. Attendees split into 5 smaller groups, to represent the 5 health geographic regions, to discuss the network’s goals, vision, objectives, motto, and slogan. Groups were facilitated by Emmanuel Zazay, Tiawanlyn G. Godwin-Akpan, Wede Seekey Tate, Jerry Kollie, Jonathan Davis and Emerson Rogers where groups collectively discussed and noted their ideas and priorities for the network.




A plenary session was held to finalize key aspects of the network’s mission and structure, ensuring consensus and buy-in from all participants. Representatives from each group presented their discussions, followed by a Q&A session. Attendees were then divided into five smaller groups, each tasked with refining the network’s goal, vision, objectives, motto, and slogan. These small group discussions ensured active participation and input from all, fostering a sense of ownership and validation. The groups then presented their collective decisions in another plenary session, inviting feedback from everyone present. The iterative process aimed to ensure all voices were heard and that the final outcomes were representative of the entire group’s perspectives.

Working together persons affected developed and agreed the following for the network:
Goal: Speaking with one voice to address the needs of persons affected by NTDs in Liberia
Vision: For persons affected by NTDs to be seen as agents of change in Liberia
Objectives:
- To promote advocacy and create awareness to minimise stigma and discrimination
- To ensure the availability of drugs and supplies
- To ensure social inclusion of persons affected by NTDs
- To ensure NTD gains made are sustained for persons affected
Motto: Inclusion & Empowerment for All Persons affected by NTDs
Slogan: Don’t Neglect , Embrace Us
A shorter name for the network was chosen: NEPA-NTDs Liberia (Network for Persons Affected by NTDs Liberia)
Agreeing on Draft of Article of Incorporation
Emerson then read the draft of the article of incorporation item by item, seeking consensus on each point to ensure collective agreement with valuable inputs from Pastor Peter B. K. Flomo.
Governance and Infrastructure
Discussions centred on establishing effective governance structures, including the composition of the board of directors and regional committees. An interim organizing leadership committee was formed, with participants first outlining key responsibilities and roles such as chairperson, co-chair, secretary, chaplain, and treasurer. A voting process then took place, resulting in the selection of leaders from different geographic regions to ensure diverse representation.
Leadership Team

Chairperson: Emmanuel Zazay, Lofa
Co-Chair: Nathaniel Gwiah, Grand Gedeh
Secretary: James D Kekula, Bong
Chaplain: Cecelia Mentro, Sinoe
Treasurer: Cecelia Baker, Maryland
Technical Advisor: Korpo Kamara, Bomi
A vote was also conducted to determine the location of the network’s headquarters. Following the vote, Montserrado County was selected as the chosen location.
Emerson closed the meeting by reiterating ownership and leadership of persons affected to drive forward change as they return to their counties as representatives. The meeting concluded with a clear path forward: to unite efforts across Liberia’s counties, empower affected individuals, and establish a strong network capable of advocating effectively for those living with NTDs.
Conclusion
The meeting in Ganta was a resounding success, laying a strong foundation for the network of persons affected by NTDs in Liberia. The collaborative spirit, diverse perspectives, and shared commitment of the participants was a reflection on how this network can be effective. This meeting marks the beginning of a united effort by persons affected by skin NTDs to improve the lives of other persons affected, fostering hope, support, and advocacy across Liberia.
A new chapter has begun—one that strives to bring about meaningful change and empower individuals to advocate for their rights and well-being. This initiative is a testament to the power of community-driven efforts in addressing health challenges and fostering a more inclusive society where people affected are agents of change.
With thanks to the organisers and the brilliant facilitation by Emmanuel Zazay, Jerry Kollie, Emerson Rogers, Wede Seekey Tate, Tiawanlyn G. Godwin-Akpan, and many thanks to Jonathan S. Davis, Pastor Peter B. K. Flomo, and Abenego Wright and our gratitude to all the attendees who travelled for this meeting for their commitment and engagement.
