How to get up to ₹50 lakh for rare disease treatment under the NPRD

India’s National Policy for Rare Diseases (NPRD) 2021 offers financial assistance of up to ₹50 lakh per patient for the treatment of listed rare diseases, including many lysosomal storage disorders (LSDs). This guide explains who can get it and the steps to follow.

Who can get the assistance?

• The patient must have a rare disease that is listed under the NPRD. Many LSDs are on the list; your Centre of Excellence (COE) can tell you whether the patient’s diagnosis is covered.
• Treatment must be given at one of the Centres of Excellence notified by the Government of India. The assistance cannot be used at other hospitals.
• The assistance is up to ₹50 lakh per patient in total, and it is subject to approval.

Step by step

1. Confirm the diagnosis. Most LSDs are confirmed with an enzyme blood test and a genetic test. Ask for copies of every report.
2. Go to a Centre of Excellence. You can approach the nearest COE, or any COE. Call or email first to book an appointment, and take all the patient’s medical reports. Our COE locator lists every COE with contact details, and our guide to visiting a COE explains what to take and what to ask.
3. The COE evaluates the patient. The doctors confirm the diagnosis and decide on the treatment plan.
4. The COE applies for the assistance. If the patient is eligible, the COE applies under the NPRD. The money is paid to the COE for the patient’s treatment, not to the family.
5. The patient is listed on the government rare disease portal. The COE can register the patient on the rare disease portal, where people and companies can donate towards the patient’s treatment. Our guide to the portal explains how it works.
6. Treatment starts at the COE. Keep copies of all reports and prescriptions, and go to every follow-up appointment.

What if ₹50 lakh is not enough?

For many LSDs, treatment such as enzyme replacement therapy (ERT) is lifelong and can cost more than ₹50 lakh in a few years. Plan early for other sources of help: the government portal, crowdfunding, company CSR funding, state schemes, ESIC for eligible families and charitable access programmes. Our guide to treatment costs explains each one.

LSDSS is asking the government to make sure no patient’s treatment stops when the limit is reached. See our appeal and how you can help.

How LSDSS can help

We can explain the process, help with paperwork and put you in touch with families who have been through it. 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.

Need help? LSDSS is run by parents and caregivers who have been through this. Message us on WhatsApp at +91 89288 08431, email contactus@lsdssindia.org, or register with LSDSS for free guidance.