Rare Disease Treatment: Up to Rs 50 Lakh Government Aid

If you or a family member has a rare disease, the Government of India can pay up to Rs 50 lakh for the treatment. This money comes under the National Policy for Rare Diseases 2021. You do not get cash in hand. The funds go straight to a notified Centre of Excellence, which is a Government hospital that treats your disease. The aid covers any of the 63 rare diseases identified under the policy. This page explains, step by step, how a patient or family actually reaches that Rs 50 lakh, and what to do if the file gets stuck.

The whole process runs through the Centre of Excellence. You do not apply to the Ministry directly. Follow these steps in order.

1. Reach a Centre of Excellence (CoE). Take the patient to one of the Government-notified CoE hospitals listed below. You will usually need a referral or a doctor's note, but you can also walk in to the CoE's genetics or paediatrics department.
2. Get a confirmed diagnosis. The CoE doctors will run tests to confirm the rare disease and place it in Group 1, 2 or 3 under the policy. A confirmed diagnosis is the foundation of the whole claim.
3. Register the patient on the rare diseases portal. The CoE registers the patient on the Government rare diseases portal at https://rarediseases.mohfw.gov.in. This creates the official record of the patient and the disease.
4. Get a treatment plan and cost estimate. The CoE doctors prepare a treatment plan and an estimated cost. This estimate decides how much of the Rs 50 lakh ceiling is needed.
5. The CoE raises the financial assistance request. The CoE forwards the case for financial assistance under the policy. The money is sanctioned to the CoE, not to you.
6. Treatment begins. Once funds are committed, the CoE buys the medicines or starts the therapy. For many rare diseases the drugs are very costly, so the CoE manages the purchase.
7. Track the balance. Keep asking the CoE how much of the Rs 50 lakh has been used. For lifelong-treatment diseases, the cost can reach the ceiling quickly, so plan ahead.

Keep copies of every paper at each step. Diagnosis report, registration number, treatment plan, and every letter from the CoE. These become your evidence if you need to file an RTI.

The aid is for patients diagnosed with one of the rare diseases notified under the National Policy for Rare Diseases 2021. The policy identifies 63 rare diseases and sorts them into three groups:

• Group 1 - Disorders that can be treated with a one-time curative treatment.
• Group 2 - Diseases needing long-term or lifelong treatment at a relatively lower cost, where the benefit is documented.
• Group 3 - Diseases that have a definitive treatment, but the cost is very high and the therapy is lifelong.

Earlier, a lower cap applied to some groups. The Government later raised the ceiling to up to Rs 50 lakh per patient for any category of rare disease treated at a notified CoE. The aid is not linked to a hard income test in the policy text, but the CoE assesses each case. The treatment must happen at a notified CoE for the funds to flow.

Below are Government-notified CoEs for rare diseases. Only these notified hospitals can route the financial assistance. Always confirm the current list on the official portal before you travel, because the Government adds new centres over time.

The Government has also added more centres such as AIIMS Patna and others. The official rare diseases portal carries the live and complete list, so check it before you decide where to go.

The Government also runs a digital crowdfunding and voluntary donation portal for rare disease patients. It works alongside the Rs 50 lakh aid. On this portal, the patient's disease, the estimated cost of treatment, and the bank account of the treating CoE are shown. Any individual, company, or other donor can give money online through a secure payment gateway. The donation goes to the CoE's dedicated bank account and is used for that patient's treatment. If the amount collected is more than needed, the surplus is used to treat other rare disease patients. This is useful when a Group 3 disease cost crosses the Rs 50 lakh ceiling.

Rare disease files can move slowly, and delay can be life-threatening. If your CoE application is stuck, do not just wait. Use the right to information to push it.

You can file an RTI with the Ministry of Health and Family Welfare or with the CoE hospital, because most CoEs are public authorities under the RTI Act 2005. Ask focused questions, such as the status of the patient's case, the date the financial assistance request was forwarded, and the reason for any delay.

A simple RTI under Section 6(1) of the RTI Act 2005 must be answered within 30 days under Section 7(1). If you get no reply or a poor reply, file a First Appeal under Section 19(1). You can draft the application in minutes with the AI RTI Drafter, and prepare an appeal with the First Appeal Builder. To understand the full RTI process from filing to appeal, read The RTI Playbook.

Sample questions you can ask in an RTI:

• What is the current status of the financial assistance request for the patient registered on the rare diseases portal under registration number ___?
• On what date did the Centre of Excellence forward this case for sanction of funds?
• How much of the Rs 50 lakh ceiling has been sanctioned and how much has been spent for this patient?
• If the case is pending, what is the reason and the expected date of decision?

Dr. Shrawan Kumar Pathak's young daughter, Kashvi Pathak, was diagnosed with a Group 3 rare disease that needs a very costly lifelong medicine. The family could never pay for it on their own. A doctor referred them to a notified Centre of Excellence. The CoE confirmed the diagnosis, registered Kashvi on the rare diseases portal, and prepared a cost estimate. The CoE then forwarded the case for financial assistance under the policy. After three months with no update, Dr. Pathak filed an RTI with the CoE asking for the status and the date the case was forwarded. The reply showed the file was pending for one signature. Once highlighted, it moved, and treatment began with funds released to the CoE. This example is illustrative, but the pattern is real. The aid exists, the CoE is the gateway, and the RTI breaks a logjam.

Up to Rs 50 lakh per patient for treatment of a notified rare disease at a Centre of Excellence. The amount sanctioned depends on the actual cost estimated by the CoE.

No. The funds are sanctioned to the Centre of Excellence, not to the patient. The CoE uses the money to buy the medicine or provide the therapy.

The 63 rare diseases identified under the National Policy for Rare Diseases 2021, sorted into Group 1, Group 2 and Group 3.

You do not apply to the Ministry directly. You reach a notified Centre of Excellence, which diagnoses the patient, registers the case, and raises the financial assistance request.

The policy text does not impose a hard income test for the up to Rs 50 lakh aid for treatment at a CoE. The CoE assesses each case. Confirm the current condition at the CoE.

You can use the Government crowdfunding and voluntary donation portal, where donors contribute to the CoE's account for the patient. Surplus funds help other rare disease patients.

There is no fixed deadline. It depends on the CoE, the diagnosis, and the sanction process. If it is delayed, an RTI to the CoE or the Health Ministry can push it.

Yes. Most CoE hospitals and the Ministry of Health are public authorities. File an RTI under Section 6(1) of the RTI Act 2005 and a First Appeal under Section 19(1) if needed.

It is a per-patient ceiling under the policy for treatment at a CoE, not a fresh yearly grant. For lifelong-treatment diseases the cost can reach the ceiling, so plan and track the balance.

Check the Government rare diseases portal at the Ministry of Health and Family Welfare. The portal carries the current and complete list, which the Government updates over time.

• National Policy for Rare Diseases 2021 and CoE financial assistance, Ministry of Health and Family Welfare rare diseases portal: https://rarediseases.mohfw.gov.in
• List of notified Centres of Excellence treating rare diseases, MoHFW portal: https://www.rarediseases.mohfw.gov.in/Hospital_Treating_Rare_Diseases
• Press Information Bureau, Initiatives by the Government for treatment of rare diseases (up to Rs 50 lakh, three groups, crowdfunding portal): https://www.pib.gov.in/PressReleasePage.aspx?PRID=1846230
• Lok Sabha written reply by Minister of State for Health Prataprao Jadhav on financial assistance of up to Rs 50 lakh for 63 identified rare diseases, 7 February 2025 (reported by Press Information Bureau and national media).
• RTI Act 2005, full text: https://righttoinformation.wiki/act