Patient Participation Group (PPG): Embedding Lived Experience at the Heart of Our Work

In 2025, TANGO2UK established its Patient Participation Group (PPG)—a significant step forward in ensuring that the voices of patients and families are central to everything we do. Two meetings have been held to date, bringing together members of our community to begin shaping a more inclusive, informed, and collaborative approach to our work. The PPG has been developed with a clear purpose: to ensure that lived experience directly informs support, research, and advocacy. As highlighted throughout our discussions, the experiences of children and families affected by TANGO2 are invaluable in shaping meaningful outcomes and guiding priorities. Objectives of the PPG The group has been designed to: • Provide lived experience insight to inform services, research, and decision-making • Co-design support initiatives and awareness campaigns that reflect real community needs • Help prioritise research in areas that matter most to families • Represent the community voice to clinicians, researchers, and wider stakeholders Why the PPG Matters For rare conditions such as TANGO2, collaboration between families, clinicians, and researchers is essential. The PPG strengthens this collaboration by creating a structured and trusted space where experiences can directly influence outcomes. Importantly, Patient Participation Groups are increasingly recognised and valued by research teams and funders. By embedding this approach, TANGO2UK is ensuring that future research, services, and partnerships are shaped not only by clinical priorities, but by the real-world experiences of those living with the condition. Looking Ahead The PPG will continue to evolve, with plans to: • Establish regular meetings throughout the year • Develop working groups to focus on key priorities • Strengthen links with clinicians and research networks • Explore the development of a clinical advisory board This work represents an important shift towards a more collaborative, community-led model—ensuring that our children and families remain at the centre of all future progress.