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Keep treatment going for rare disease patients

India’s rare disease policy gives patients a one-time grant of up to ₹50 lakh. For many people with lysosomal storage disorders, who need treatment for life, that money has run out. LSDSS is asking the government to make sure no patient’s treatment stops.

The problem in brief

Government support

One-time grant of up to ₹50 lakh (NPRD 2021)

Cost of treatment

Enzyme replacement therapy can cost ₹50 lakh to ₹2 crore a year

Grant used up

164 patients, as LSDSS told the Prime Minister in October 2026

Not on treatment

5 in 10 patients registered with LSDSS were not on treatment when they registered

What is happening

When the grant runs out, treatment stops

The National Policy for Rare Diseases (NPRD) 2021 gives eligible patients financial assistance of up to ₹50 lakh for treatment at a Centre of Excellence. It is a one-time amount.

Many LSDs, including Gaucher, Pompe, Fabry and MPS, are treated with enzyme replacement therapy (ERT), which has to continue for life. ERT can cost ₹50 lakh to ₹2 crore a year, so the grant can run out within a year or two.

When it runs out, treatment stops, and the disease can progress again. In October 2026, LSDSS wrote to the Prime Minister about 164 patients who had used up their grant.

How we got here

2017–18

Following a petition by LSDSS, the Delhi High Court directs the Health Ministry to frame a national policy for rare diseases.

2021

The National Policy for Rare Diseases is notified. Support is later set at up to ₹50 lakh per patient.

Oct 2024

The Delhi High Court orders the government to set up a National Fund for Rare Diseases, with ₹974 crore for 2024–25 and 2025–26 (report).

Since then

The government has appealed against the order in the Supreme Court, where the case is pending.

Oct 2026

LSDSS appeals to the Prime Minister for patients whose grant has run out.

What we are asking for

Three things the government can do

No patient’s treatment should stop

Release interim funds now for patients whose ₹50 lakh grant has run out, while the case continues in court.

Support beyond ₹50 lakh, case by case

Let Centres of Excellence approve further funding for patients who need treatment for life.

Make continuity of treatment permanent

Build lifelong treatment into the national policy, including the National Fund for Rare Diseases ordered by the Delhi High Court.

How you can help

Every voice adds weight to our appeal. These take a few minutes.

Share this page

Send it to friends and family, and share it on social media. The more people know, the harder it is to ignore.

Write to your MP

Your Member of Parliament can raise this with the Health Ministry. Use our ready-made letter and add your own words if you like.

Has your treatment stopped?

If your grant has run out, or is about to, tell us. We include patients’ situations in our appeals to the government.

Support our work

LSDSS is run by volunteers. Donations support our guidance, help with supportive care and advocacy, and are tax-exempt under Section 80G.

Write to your MP

A letter you can send today

Dear [name of your MP],

I am writing as a voter from [your town or city] about patients with rare diseases, such as lysosomal storage disorders (LSDs).

Under the National Policy for Rare Diseases 2021, eligible patients receive one-time financial assistance of up to Rs 50 lakh. Many LSD patients need enzyme replacement therapy for life, and this grant can run out within a year or two. When it does, their treatment stops.

I request you to urge the Ministry of Health and Family Welfare to:
1. Release interim funds so that no patient’s treatment is interrupted.
2. Allow support beyond Rs 50 lakh, case by case, through the Centres of Excellence.
3. Make continuity of treatment a permanent part of the national policy.

Thank you for your support.

Yours sincerely,
[Your name]
[Your address and phone number]

Sources: National Policy for Rare Diseases 2021; Delhi High Court, Master Arnesh Shaw v. Union of India, order of 4 October 2024 (LiveLaw report); LSDSS. Journalists can contact us at contactus@lsdssindia.org.

Need help with treatment costs now?

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