Bengaluru : Organization for Rare Diseases India and St. John`s Medical College and Hospital have signed an MoU (Memorandum of Association) to Support Children with Rare Kidney Diseases & their Families
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 Paediatric 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 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 Pediatric Nephrology Master Karthik & Likitha- patients, Prasanna Shirol, Co-founder & Executive Director, ORDI at Unit of Hope, St John’s Medical College Hospital
It was attended by 50+ 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.
Dr. Priya Pais, Professor and Head of the Department, Pediatric Nephrology; St. John`s Medical College and Hospital 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. We look forward to working with ORDI, who have extensive experience in patient advocacy, support and empowerment activities, and believe that together we will make a positive change in the lives of kids with rare kidney diseases.”
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.”