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ISN Patient Liaison Advisory Group Members Report on Recent Activities Highlighting the Importance of the Voices of People Living with Kidney Disease to Improve Kidney Care

Mr. Manvir Victor (center with hat and sunglasses) alongside participants at the third “Transplant Awareness Walk” that took place in May in Kuala Lumpur

Mr. Manvir Victor, past chair and member of the ISN Patient Liaison Advisory Group, reports on transplant awareness walks in Malaysia:

“The third consecutive monthly “Transplant Awareness Walk” took place the last weekend in May in Kuala Lumpur. The walks were initiated in March 2023 by myself and Mr. Siva Kumar Raghavan, the first Malaysian dialysis patient to summit Mount Kinabalu in 2022. These “first-of-a-kind” walks have progressively become more popular.

Taking place every last Sunday of the month at one of the most frequented parks in Kuala Lumpur, Lake Titiwangsa, the walks aim to create a relaxed environment where people waiting for kidney transplants and their families can access healthcare professionals outside the clinical setting.

Participants joining the patients include transplant surgeons, nephrologists, nurses, medical students, and caregivers, but walks are open to everyone and are free of charge.

Mr. Raghavan and I are both kidney transplant recipients. We hope that these walks will pick up in other states in Malaysia, connecting more healthcare professionals with patients and future transplant patients.”

For more details on the “Transplant Awareness Walks” in Kuala Lumpur, follow @manvirvictor on Twitter.


Mr. Joab Wako*, chair of the ISN Patient Liaison Advisory Group, reports on his experience at the 2023 International Alliance of Patients’ Organizations (IAPO) Global Patients Congress (GPC 2023):

“The GPC 2023 comprised a packed program of talks and sessions from passionate speakers celebrating and learning from patient engagement and co-creation to help improve the availability and accessibility of safe and innovative health care.

Watch a recording of the congress.

The IAPO congress took place in Geneva, a few kilometers from where the 76th World Health Assembly (WHO) was being held. This synchronicity was no coincidence; this year’s IAPO congress focused on including patients or persons with a lived experience, like me, at all levels of health governance and decision-making. What better time and place to hold this than during the World Health Assembly, where 194 WHO member states, partner agencies, representatives of civil societies, and experts gather to discuss current and future priorities for global health?

Since the WHO celebrates its 75th anniversary this year, the IAPO congress looked at the key role patients and patient organizations play in co-creating and advancing global health.

Patients are at the center of healthcare systems. We must co-design future systems in the wake of advancing digital health, artificial intelligence, and machine learning.”

*Mr. Wako has a record of accomplishments in championing the lived experience with WHO and took part in the consultation process to draft the WHO Framework for Meaningful Engagement of People Living with NCDs and Mental Health and Neurological Conditions, eventually co-chairing its launch on May 11, 2023. This framework seeks to support the WHO and its Member States to include input from people with lived experience within health-related programs and policies. Mr. Wako also shared valuable insights into the challenges faced by people living with kidney diseases as a speaker at the recent ISN-Devex event at WHA76.

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