Lysosomal Storage Disorders Support Society (LSDSS) - India

Founded in 2010, the Lysosomal Storage Disorders Support Society (LSDSS) is a registered pan-India non-profit organization headquartered in New Delhi, India, and headed by parents and caregivers of Lysosomal Storage Disorder (LSD) patients who know what it’s like to live with LSDs. LSDSS endeavors to transform the life of children affected by rare Lysosomal Storage Disorders. Our mission is to increase awareness about the prevention of such disorders in future offspring as well as counsel the affected patients and families on how to cope with existing conditions, ensuring no patient or family living with an LSD ever feels alone. Our vision is to ensure that every person in India suspected with a LSD will receive an accurate and timely diagnosis and that every person diagnosed with a treatable LSD will have access to the care and treatment they rightfully deserve. Over its 12-year journey, the LSDSS has achieved several key milestones and successes, such as persuading the Government of India to draft and notify the National Policy for Rare Diseases, abolition of GST by the government on life-saving drugs imported through compassionate access programs, and initiation of state-sponsored treatment through judicial intervention for several patients in states such as Karnataka, Kerala and Tamil Nadu.