ORDI & St John's Medical College Team Up to Support Kidney Disease Patients

The Organisation for Rare illnesses India (ORDI) and St John's Medical College and Hospital have signed a Memorandum of Understanding (MoU) to help children with rare kidney diseases and their families. These include about 150 rare illnesses, which are typically associated with low prevalence and complex cause.

These illnesses can have a significant influence on renal function and overall health. Despite their rarity, they have a global impact on millions of people. There are about 150 uncommon kidney illnesses documented, the majority of which are inherited.

The Alliance for Rare Kidneys combines the expertise of St John's Paediatric Nephrology and ORDI to form the Rare Disease Care Coordination Centre (RDCCC) at SJMCH in Bengaluru. 

At the inaugural event of the Alliance for Rare KIDneys support group, Fr Jesudoss Rajamanickam, director, SJMCH, Rev. Tony AJ, associate director- finance, SJMCH, Dr. Tony D S Raj, Dean of St John`s Research Institute, Dr Priya Pais, Professor and Head, Department of Paediatric Nephrology Master Karthik & Likitha- patients, Prasanna Shirol, co-founder & executive director, ORDI were present at the at Unit of Hope, St John’s Medical College Hospital.   Dr Pais, said, “Our partnership with ORDI aims to improve the overall wellbeing of children suffering from rare and chronic kidney diseases. While we provide the highest level of medical care, we acknowledge that our patients and their families face many struggles, from the lack of availability of disease modifying drugs in India, the uncertainty of a lifelong disease and its burdens on the family to the challenges of integrating normal childhood activities like education and social relationships.