The Department of Pediatric Nephrology at St. John’s Medical College Hospital has been at the forefront of providing comprehensive care for children with kidney diseases for over two decades. Established formally in 2013, the department offers a full spectrum of services, from outpatient nephrology care to dialysis and kidney transplants. As the first center in India to offer a DM program in Pediatric Nephrology, St. John’s has trained nearly 70 pediatricians from India and abroad. The department’s mission is to provide ethical, multidisciplinary, and affordable care for children, with a vision to be recognized as a global center of excellence.
Organization for Rare Diseases India (ORDI) is a non-profit organization dedicated to improving the lives of patients with rare diseases in India through awareness, advocacy, research, and patient support. Founded in 2014, ORDI works to reduce disparities and ensure access to care for patients with rare diseases, influencing policy-making and facilitating collaborations both nationally and internationally.
Alliance for Rare KIDneys brings together the expertise of St. John’s Pediatric Nephrology and ORDI to establish the Rare Disease Care Coordination Center (RDCCC) at SJMCH, Bengaluru. This partnership aims to provide comprehensive non-medical and medical assistance for children with rare kidney diseases, focusing on awareness, prevention, and treatment.
This collaboration is crucial because it combines the clinical excellence of St. John’s with ORDI’s advocacy awareness and research capabilities. Together the alliance strives & intends to develop standard operating procedures, organize medical camps , conduct education and awareness programs to improve the diagnosis and treatment, establishing a support group, benefiting children with Rare kidney disease and their families.
Introducing the Team
The Pediatric Nephrology team at St. John’s consists of renowned experts in the field:
- Dr. Priya Pais – Professor and Head of Pediatric Nephrology
- Dr. Arpana Iyengar – Professor of Pediatric Nephrology
- Dr. Anil Vasudevan – Professor of Pediatric Nephrology
- Dr. Nivedita Kamath – Associate Professor of Pediatric Nephrology
The team at Organization for Rare Diseases India consists of:
- Mrs. Chetana- Head- Patient support
- Mr.Praveen Kumar D.S. -Head –Events
- Mr.Madhan Gopal J- Chief Operating Officer.
- Team of volunteers across the country to support the alliance.
The collaboration between St. John’s and ORDI represents a significant step toward advancing care and support for children with rare kidney diseases in India, providing hope and a better quality of life for affected families.
