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Help with Treatment Costs for LSDs in India
Treatment for many lysosomal storage disorders is lifelong and can cost from several lakhs to a few crore rupees a year. This guide explains the main sources of help in India, and how LSDSS can guide you through them.
At a glance
Government support
Up to ₹50 lakh under NPRD 2021
Where to start
Your nearest Centre of Excellence (COE)
More funds
Government crowdfunding portal, CSR, ImpactGuru
LSDSS
Free guidance, and help with supportive care costs in some cases
Sources of help
Most families combine several of these. Start with step 1: everything else builds on the COE evaluation.
1. Government support under the NPRD
Under the National Policy for Rare Diseases (NPRD) 2021, eligible patients with a listed rare disease can receive financial assistance of up to ₹50 lakh for treatment at a Centre of Excellence.
How to apply: visit your nearest COE with all medical reports. The COE evaluates the patient and applies for the assistance, which is paid to the COE for treatment.
2. Government crowdfunding and CSR portal
The government’s rare disease portal lets members of the public and companies donate towards the treatment of registered patients.
How to apply: the COE registers the patient on the portal. Share the patient’s portal page with family, friends and employers.
3. Crowdfunding with ImpactGuru
LSDSS has partnered with ImpactGuru, a crowdfunding company, to help LSD patients raise funds for treatment.
How to apply: when you register with LSDSS, choose “Yes” to registering with ImpactGuru and give your consent.
4. Charitable access programmes
Some pharmaceutical companies give free treatment to a limited number of patients. For Gaucher disease, the International Gaucher Alliance (IGA) keeps a waiting list. Places are very limited.
How to apply: for Gaucher disease, fill in the IGA online form and tell us once you have applied. For other LSDs, ask us about current programmes.
5. ESIC
Following an affidavit filed by ESIC in the Delhi High Court on LSDSS’s intervention, eligible children of employees insured under the Employees’ State Insurance Corporation (ESIC) can receive treatment for LSDs and other rare diseases free of cost.
How to apply: ask at your ESIC hospital, and contact us if you need help.
6. State governments and the courts
Some state governments fund treatment, in several cases after court orders. LSDSS has secured court orders for state-funded treatment in states including Karnataka and Kerala.
How to apply: ask your COE about schemes in your state. Talk to us before considering legal action.
7. Company CSR funding
Companies can fund treatment through their corporate social responsibility (CSR) budgets, either through the government portal or through registered organisations.
How to apply: approach companies near you or where family members work, and point them to the patient’s page on the government portal.
8. Clinical trials
Treatment given as part of a clinical trial is usually free. Trials are not right for everyone, and places are limited.
How to apply: see the trials recruiting in India listed on each disease page, and discuss them with your doctor.
How LSDSS helps
We guide you at every step
LSDSS cannot pay for disease-specific treatment such as enzyme replacement therapy (ERT) or substrate reduction therapy (SRT). Our team of parents and caregivers can help you find and apply for every source of support, and in some cases we can help with the cost of supportive care.
Guidance
We explain the options, connect you with COEs and specialists, and help you plan.
Applications
We help with NPRD, portal and charitable programme applications.
Supportive care
In some cases, we can help with the cost of supportive care, such as surgery, for families who cannot afford it.
Advocacy
We campaign for sustainable, lifelong funding for every LSD patient.
Questions about costs
Answers to common questions about paying for LSD treatment in India.
Under the National Policy for Rare Diseases (NPRD) 2021, eligible patients with a listed rare disease can receive financial assistance of up to ₹50 lakh for treatment at a government-designated Centre of Excellence.
Families can raise further funds through the government’s crowdfunding and CSR portal, crowdfunding platforms such as ImpactGuru, company CSR budgets, state schemes or charitable access programmes. LSDSS continues to advocate for sustainable, lifelong funding for every LSD patient.
LSDSS cannot pay for disease-specific treatment such as enzyme replacement therapy (ERT) or substrate reduction therapy (SRT). In some cases, we can help with the cost of supportive or symptomatic care, such as surgery, for families who cannot afford it. We also guide families through every source of support and help with applications, free of charge.
Following an affidavit filed by ESIC in the Delhi High Court, eligible children of employees insured under ESIC can receive treatment for LSDs and other rare diseases free of cost. Ask at your ESIC hospital, and contact us if you need help.
Use the government’s rare disease portal or an established crowdfunding platform, keep copies of all medical documents, and share updates with your donors. Be cautious of anyone who asks you for money to arrange treatment or funding.
Need help with costs? Talk to us
Message us on WhatsApp at +91 89288 08431, call +91 98100 22645 or email contactus@lsdssindia.org.
LSDSS is a patient support group run by parents and caregivers. We can guide you, and in some cases help with the cost of supportive care such as surgery, but we cannot fund disease-specific treatment such as ERT or SRT, or give medical advice.