We at ORDI inaugurated ARK (Alliance for Rare KIDneys) to Support Patients Suffering from Rare Kidney Diseases on 13th  September 2024,

Rare kidney diseases include more than 150 rare disorders, generally characterized by low prevalence and often with multifactorial causation; these disorders often have a major impact on kidney function and general health. Although individually rare, they collectively affect millions around the world. More than 150 rare kidney diseases are recognized; most are inherited.

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.  The function was organised to inaugurate “Alliance for Rare KIDneys” support group.

The function was jointly inaugurated by Rev. Fr. JesuDoss Rajamanicam, Director, SJMCH, Rev. Fr. Rev. Fr. John Thekkara, Associate Director, SJMCH, Dr. Tony D S Raj, Dean of St. John`s Research Institute, Dr. Priya Pias, HOD Ped-Nephto, Master Karthik- patient, Mr. Prasanna Shirol, Co-founder & Executive Director, ORDI and patient at Unit of Hope, SJMCH.

It was  attended by 30+ patients and caregivers, Department Heads, Staff and ORDI staff and Volunteers.

An official website – https://rarekidneydiseases.ordindia.in/ was launched during the occasion to register patients, volunteers and to provide information about Rare Kidney Diseases.

Mr. Prasanna Kumar Shirol, Co-founder & Executive Director of ORDI, said, “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.”

Mr Madhan, Mr Praveen, Mrs Chetana, Ms Lavanya from ORDI were present.