Rare But Real: Why We Must Talk About Rare Diseases in India

A mother holding her child, symbolizing strength and the silent struggle of rare disease families.

India is making progress in healthcare — but for millions silently living with rare diseases, that progress still hasn’t reached them.

While conditions like diabetes, tuberculosis, and heart disease often get national focus, there exists another group — patients with rare diseases — whose daily struggles remain mostly invisible. Their conditions are complex, their journeys lonely, and their access to support, minimal.

In 2021, the Government of India officially notified the National Policy for Rare Diseases (NPRD). While this marked a major policy step, implementation remains a challenge — with gaps in funding, lack of awareness, and very limited centers for diagnosis.

Understanding Rare Diseases In India

Rare diseases are those that affect fewer than 1 in 2,000 individuals. But with over 7,000 known rare conditions worldwide, they are not as “rare” as the name suggests. In India alone, an estimated 70 to 96 million people may be affected, many without even knowing it.

These include conditions like:

• Duchenne Muscular Dystrophy

• Spinal Muscular Atrophy (SMA)

• Gaucher’s Disease

• Mucopolysaccharidosis (MPS)

• Wilson’s Disease

• CDKL5 Deficiency Disorder — a severe neurological condition causing drug-resistant seizures in infants

In many cases, children suffer for years before they are even diagnosed, missing critical treatment windows and emotional support.

The Harsh Reality in India

1. Delayed Diagnosis:

   Most primary healthcare providers in India lack training in rare diseases, leading to misdiagnosis or no diagnosis at all.

2. Treatment Cost & Availability:

   Many treatments are not available in India. If they are, they’re often unaffordable — running into lakhs or even crores annually.

3. Emotional Isolation:

   Parents and patients often feel utterly alone, with no peer group, no visibility, and no guidance.

4. Geographical Divide:

   Diagnosis centers are limited to metros. Patients from rural areas often never make it to a specialist.

   
   

How Arogya India Intends to Help

We at Arogya India believe health is a right, not a privilege — especially for those navigating conditions so misunderstood that they’re almost invisible.

Through our patient support programs, we aim to:

• Raise awareness about rare diseases, starting at the community level

• Identify genuine patients in need of diagnostic and emotional support

• Build connections with existing specialist centers and advocacy groups

• Push for greater policy dialogue and public attention on rare disease care

You Can Be Part of the Solution

• Share knowledge about rare diseases with your network

• Support funding drives for medical diagnostics and travel

• Stand with families who are too often unheard

• Donate, if you’re able — so a child with seizures or a teenager with muscular degeneration doesn’t wait in silence

Rare, But Real. And They Matter.

Let’s move toward a future where no patient feels forgotten just because their condition isn’t common.

Let’s bring visibility to the invisible.

Because for millions of families in India, recognition, diagnosis, and timely care could change everything.