India’s first patient society for LSDs · Since 2010
Lysosomal Storage Disorder (LSD) support in India
Helping patients with Gaucher, Pompe, Fabry, MPS and other LSDs access diagnosis, treatment, funding and expert care. Founded and run voluntarily by patients and their families.
- 80G tax-exempt donations
- Registered non-profit society
- Global Genes “Champions of Hope” 2022
Latest
Rare Disease Day 2026, Trivandrum: see photos from our latest awareness event
How can we help you today?
Whether you are living with an LSD, caring for someone who is, or want to support them, start here.
I’m a patient or caregiver
Register with us to get support, guidance on treatment and funding, and the latest developments about your condition.
I want to help patients
Your donation funds supportive care, surgeries and rehabilitation for patients who cannot afford them. All donations are tax-exempt under Section 80G.
I want to learn about LSDs
Understand the symptoms, diagnosis and treatment of Gaucher, Pompe, Fabry, MPS and other lysosomal storage disorders.
Our journey
16 years of advocacy that changed policy for LSD patients
2010
Founded by parents and caregivers of LSD patients. India’s first International Rare Disease Day held in New Delhi.
35 children
received treatment in the first batch of the International Charitable Access Program that LSDSS helped start in India in 2014.
2017–18
Our petition led the Delhi High Court to direct the Health Ministry to frame a national policy for rare diseases.
2022
Won the Global Genes “Champions of Hope” award in San Diego for our work for LSD patients in India.
About us
Founded by families. Driven by hope.
Founded in 2010, the Lysosomal Storage Disorders Support Society (LSDSS) is the first patient organisation in India to bring LSDs and rare diseases to the forefront of policy discussion. It is a pan-India non-profit registered in New Delhi and headed by a group of parents and caregivers of LSD patients.
Over the years, LSDSS has achieved historic milestones towards creating treatment options for deserving and eligible patients through International Charitable Access Programs as well as through state healthcare budgets of different states in India.
Manjit Singh, President, LSDSS
Conditions we support
LSDs are ultra-rare genetic metabolic disorders in which a missing or faulty enzyme causes harmful substances to build up in the body’s cells. These are the most common in India.
Gaucher disease
Fat-laden Gaucher cells build up in the spleen, liver and bone marrow, often causing an enlarged abdomen.
Pompe disease
Glycogen, a complex sugar, builds up in the body’s cells because of a deficiency of the GAA enzyme.
Fabry disease
Fatty substances called sphingolipids build up in the walls of blood vessels and other organs.
Mucopolysaccharidosis (MPS)
Complex carbohydrates build up in the skeleton, joints, eyes, ears, skin and other tissues.
Other LSDs we support
Fats build up in organs such as the spleen, liver, lungs and brain.
A fatty substance builds up in nerve cells of the brain and spinal cord.
Sulfatides build up and damage the protective covering of nerves.
For patients & caregivers
Are you an LSD patient or caregiver?
Register with us to get support and know the latest developments about your disease. After registering, follow the steps in the email we send you.
Important update
National Policy for Rare Diseases, 2021
The Government of India has identified Centres of Excellence (COEs) and set up a digital platform for crowdfunding and CSR donations for rare disease treatment. Visit your nearest COE with all medical reports for evaluation and registration.
Trusted by India’s leading genetic experts
We are proud to work with prominent genetic experts and clinicians across India.
It was the first such pan India voluntary society on Lysosomal Storage Disorders. Its office bearers who are mostly parents of patients have taken it to dizzy heights…
Dr. I. C. Verma
Senior Consultant and Advisor, Institute of Medical Genetics & Genomics, Sir Ganga Ram Hospital, New Delhi
We at Mediscan, Chennai are proud to be associated with LSDSS since 2010 (its inception). We have done hundreds of awareness programs on LSDs together…
Dr. Sujatha Jagadeesh
Head, Dept. of Clinical Genetics, MediScan Hospital, Chennai
…I highly appreciate its voluntary office bearers for creating awareness of rare diseases, especially LSDs, at grassroots level.
Dr. A. P. Dubey
Professor of Pediatrics, ESI PGIMSR, New Delhi; former Director Professor & Head of Pediatrics, MAMC
Patient stories
Type-1 Gaucher · New Delhi
Pompe · Ghaziabad
Type-1 Gaucher · Uttarakhand
Type-1 Gaucher · Jaipur
MPS IV-A · Kasganj, UP
Our partners
We work with national and international organisations to strengthen the patient voice and improve awareness about LSDs.
Frequently asked questions
Answers to common questions about lysosomal storage disorders.
Still have a question?
LSDs are a group of rare genetic diseases caused by mutations in genes for lysosomal enzymes. When an enzyme does not work properly, molecules build up inside cells and damage organs. There are over 50 types, including Gaucher, Fabry, Pompe and Niemann-Pick disease.
Symptoms vary by disorder and can include delayed development, seizures, bone deformities, joint stiffness, breathing difficulty, vision and hearing problems, easy bruising and a swollen abdomen.
Through a medical evaluation and family history, followed by laboratory tests such as enzyme assays, genetic testing and imaging studies.
There are approximately 600 known LSD patients in India. The real number is likely higher, as many patients may be undiagnosed or misdiagnosed.
Treatments are highly specialised and made for very small patient groups. Many LSDs are treated with enzyme replacement therapy, which is costly to produce and must be given regularly for life.
Visit your nearest Centre of Excellence (COE) with all medical reports to get the patient examined and enrolled on the Government of India’s rare disease portal. Then register with LSDSS and follow the steps in the email we send you.
LSDs are genetic, so they cannot be prevented in the usual sense. Genetic counselling and carrier testing can help families understand and reduce the risk of passing the condition on.
Most LSDs currently have no cure, but treatments such as enzyme replacement therapy can manage symptoms, slow progression and improve quality of life.
We need your help
Besides expensive treatment, many LSD patients also need supportive care such as surgeries to manage their condition. LSDSS helps needy patients get supportive and rehabilitative care, and needs your help to make this possible.
- All donations to LSDSS are tax-exempt under Section 80G of the Income Tax Act.