Lived Experience Advisory Group (LEAG)

Summary

The idea of the Lived Experience Advisory Group (LEAG) emerged from FIND’s belief in the principle of “Nothing about us, without us.” Recognizing that people living with non-communicable diseases (NCDs) carry unique insights into their care journeys, the NCD programme sought to integrate their perspectives into decision-making. An earlier version of the group had been established but paused due to funding constraints. With renewed commitment and resources, the group has now been re-established to ensure that the voices of people most affected by NCDs inform the programme’s strategies and activities.

The purpose of the group is to provide input that helps FIND NCD program consider the real-world impact of its work on individuals and families living with NCDs. By sharing their experiences, knowledge, and best practices, members help shape projects on diagnostics and technology, advocacy, research, and market access. This ensures that innovations are not only technically sound but also equitable, accessible, and aligned with the daily realities of those living with conditions like diabetes, hypertension, chronic kidney disease, and co-morbidities such as HIV or TB.

Group Membership

The group led by Dr Yvonne Kamau, Scientist in the NCD program,  brings together six members with diverse geographical  backgrounds:
• Newton Ngugi (Kenya)
• Carol Nawina (Zambia)
• Mridula Kapil  (India)
• Anita Sabidi  (Indonesia)
• Mark Barone  (Brazil)

Collectively, they represent lived experiences across type 1 and type 2 diabetes, co-morbid conditions, and advocacy leadership in their respective regions. The advisory group members are rooted in civil society or community-based organizations, and are actively engaged in advocacy, peer support, or service delivery in their local contexts.

Meetings are scheduled quarterly, with occasional ad-hoc engagements such as panels or conferences. The Kick-off meeting in August 2025 provided an opportunity for the advisory group to share their insights on what should be prioritized to expand access to diabetes diagnostics and technologies and highlighted the most urgent issues affecting their countries and communities, for people living with NCDs. They also noted positive developments that are helping to improve diabetes care, and reflect on the importance of inclusion. The conversation was energizing and affirmed the value of integrating lived experience into FIND’s NCD work.