Implementing Agency: Organisation of Rare Diseases India
Established in 2014, ORDI operates with the vision of enabling a better life for people living with rare diseases and the mission to be a strong, united voice that reduces inequalities and ensures equitable access to care across India. With over 7,000 rare diseases globally and more than 400 identified in India, affected individuals face significant medical, financial, and rehabilitative challenges. Beyond treatment and diagnostics, continuous physical rehabilitation is essential to maintain mobility, prevent complications, and preserve quality of life.
Through CSR support, Pharmed Foundation has enabled ORDI to establish two key areas of focus aimed at enhancing long-term, patient-centric support systems and strengthening physical rehabilitation access for individuals living with rare diseases. Following are the two focus areas:
1. The Foundation, commemorating the life and legacy of its Former Chairman Emeritus, Late Krishan Kumar Aurora, announces the “KK Aurora Light of Hope Fund”. This initiative reflects a deep commitment to ensuring that patients, predominantly children, living with rare diseases receive compassionate, affordable, and timely respiratory care. The fund aims to support continuity of treatment beyond ICU discharge, in line with medical advice, while easing the financial strain on families. Through this initiative, Pharmed Foundation will enable access to vital respiratory equipment and other essential assistive technologies—bringing sustained care, dignity, and hope to the children in need.
2. The CSR support from Pharmed Foundation has also enabled ORDI to establish a dedicated Physiotherapy Centre at ORD India’s office in Bengaluru, providing free or subsidised services to children and adults living with rare diseases. The centre is committed to delivering continuous, high-quality physiotherapy and rehabilitation at minimal or no cost, integrating counselling, patient navigation, and structured home-exercise support to strengthen holistic care.
Over 12 months, the initiative aims to support more than 200 rare disease patients, reduce pain and progression of musculoskeletal complications, improve mobility, respiratory strength, independence, and functional ability, while systematically documenting outcomes to build an evidence-based rehabilitation model for rare diseases in India.
