As part of CASCADE-iAES, CCRG in collaboration with Pakistan Kidney and Liver Institute, hosted the second Suno Samjho Sambhalo community event at Nishat Hotel Lahore, dedicated to severe brain infections on 8th August 2026. It brought together survivors of brain infections, their caregivers, doctors, and psychologists to engage in conversations about challenges, perspectives and the way forward for acute brain infection research and patient rehabilitation.

CASCADE-iAES (Coordinated Action for Surveillance, Characterisation, and Data-driven Evaluation of Infectious Acute Encephalitis Syndrome) is a holistic research programme led by the CCRG in collaboration with ISARIC – International Severe Acute Respiratory and Emerging Infection Consortium supported by the Wellcome Trust, the Bill & Melinda Gates Foundation, and the UK Foreign, Commonwealth & Development Office (FCDO).

The session was divided into three parts:

Suno: patients and caregivers shared their experiences of fear, uncertainty, and challenges in recognizing early symptoms, underlining the urgent need for more patient-centered care and research.

Samjho: doctors shared their knowledge, experience and advice regarding seeking the right care, and myths around certain treatment and diagnostic procedures.

Sambhalo: a discussion between both groups on understanding each other’s perspectives and creating awareness regarding care-seeking and rehabilitation.

As a result of this, we are now better able to understand some of the challenges faced by patients and their families, including understanding the importance of a lumbar puncture, recognising the severity of headaches and other symptoms that may otherwise be overlooked, and the lack of clear communication from doctors, which often leaves families searching for answers online.

We are grateful to the survivors and their families that attended and shared their stories, and recognise how emotional and overwhelming such conversations can be. Two psychologists were present throughout the event and during the session, the group underwent guided meditation to emotionally regulate.

This landmark initiative signals a cultural shift in Pakistan’s healthcare and research bringing patients, caregivers, and doctors together to co-create safer, better care for those affected by brain infections.

Special Thanks:

• CASCADE-iAES Coordinator Dr. Ayesha Siddiqui, and PPIE Coordinator Dr. Arishay Hussaini for moderating the event.

Dr. Atba Khan and Dr. Alina Raheem for coordinating and engaging patient partners.