The Rare and Orphan Diseases Consortium of India Add your name ↓
A public statement and national petition

Rare diseases are common. India has never counted its patients.

दुर्लभ रोग आम हैं। भारत ने अपने रोगियों को कभी गिना ही नहीं।

Together, more than 7,000 rare diseases affect an estimated 70 to 100 million Indians, most of them children, and most never diagnosed. We, the rare and orphan disease community of India, ask the Government of India to find, recognize, and care for these patients. Every figure on this page comes from government records, inter-governmental bodies, or peer-reviewed research.

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In memory of Shlok

His name means a sacred verse

Shlok was twelve years old. He lived with Prader-Willi syndrome, and his parents fought for him with everything they had, through every hospital corridor, every specialist, every setback, until the end. In much of the world today, a child with his condition receives early diagnosis and coordinated care, and grows into adulthood.

A shlok is a verse composed to outlive the voice that first spoke it. This effort now carries his name.

We act so that the next Shlok is found early, diagnosed correctly, and never fights alone.

The statement

A problem hidden by its own definition

A disease is called "rare" when few people have it. That single word has done immense harm. It makes each condition sound like someone else's problem, a curiosity at the far edge of medicine. The truth is the opposite. There are so many rare diseases that, added together, they are common. The World Health Organization now recognizes that over 300 million people worldwide live with a rare disease, that there are more than 7,000 such diseases, and that about 70 percent of them begin in childhood. Roughly 95 percent of these diseases still have no medicine that treats the disease itself.

India has never measured how many of its own people are affected. Every number used for India is borrowed from studies done in the West. That gap in knowledge is the single most important fact on this page, and it is the reason we write.

7,000+
distinct rare diseases recognized worldwide (WHO, 2025)
7–10 crore
Indians estimated to live with one (extrapolated; never measured)
~70%
begin in childhood (WHO, 2025)
15
Centres of Excellence for 1.4 billion people (Lok Sabha, Feb 2026)
1,118
patients ever funded for treatment under the national policy (Lok Sabha, Aug 2024)
Rs 271 cr
rare-disease treatment funds set to lapse unspent in FY 2025-26 (RTI, Feb 2026)

Sources: WHO Resolution WHA78.11 (2025); Nguengang Wakap et al., Eur J Hum Genet 2020; Government of India Lok Sabha replies (Aug 2024, Feb 2026); The Hindu RTI report (Feb 2026). Full bibliography in the petition PDF below.

When a disease is not counted, three things follow

All of them cost lives. First, doctors are not trained to recognize what they are told is vanishingly rare, so children are misdiagnosed for years. Second, governments cannot plan services, screening, or budgets for a population whose size is unknown. Third, families are left alone, often bankrupted, searching for a name for their child's suffering. Patients can spend years and see many doctors before anyone identifies the illness. For a child with a treatable disease, those lost years are the difference between a full life and an early death.

India has taken real first steps, and they deserve acknowledgment. The National Policy for Rare Diseases of 2021 created a framework, named 63 diseases for support, and set financial help of up to Rs 50 lakh per patient. The number of government Centres of Excellence has grown from 8 to 15, now including AIIMS Patna in Bihar. India has built a national registry that has enrolled 15,369 patients.

And yet the system reaches almost no one. In the policy's first years, only 1,118 patients received treatment support under it. In the financial year 2025-26, of about Rs 299 crore set aside for rare-disease treatment, only about Rs 31 crore was spent, and roughly Rs 271 crore was set to lapse unspent. The larger fund ordered by the Delhi High Court has been held up in the courts and is not yet reaching patients. The money is not the first problem. The first problem is that we have not found the patients. Funds meant to save lives are going back to the treasury while children die waiting.

Funnel chart: of 70 to 100 million Indians estimated to live with a rare disease, 15,369 are on the national registry and 1,118 have ever been funded for treatment.
Of the 70 to 100 million Indians estimated to live with a rare disease, about 1 in 5,000 is on the national registry, and about 1 in 75,000 has ever been funded for treatment.
The objections, answered

The numbers provoke disbelief. Here are the answers.

"It is impossible that 100 million Indians have rare diseases." It is the same rate the world lives with; the United States, which counts, finds 1 in 10. A low Indian count measures how little we look, not how few are ill, and marriage within communities raises the odds of inherited disease here.
"America is different from India." The difference is that India does not screen or register its patients, so it does not see them. A cancer no one tests for is still cancer.
"India cannot handle common diseases, so why chase rare ones?" The tools that find rare diseases (newborn screening, genetic testing, registries) strengthen care for everyone, and many rare diseases are common illnesses misdiagnosed.
"If we find them, who treats them and who pays?" Most common rare diseases are treatable, several of them cheaply, and early diagnosis costs far less than the years of wrong tests and emergencies that follow a missed one. A birth screen for phenylketonuria costs little and prevents a lifetime of disability.
"If they live longer, the population will grow." These are overwhelmingly children. A nation is measured by whether it protects its most vulnerable, not by whether it finds them inconvenient.
Grouped bar chart comparing life expectancy with modern care versus without diagnosis for selected rare diseases.
What a diagnosis is worth: for many rare diseases, early recognition and standard care change the expected course of a life.
What we ask

Three asks, on India's existing rails

The deepest gap is between what we believe and what we know: we run a national policy on a number no one has measured. India already proved it can measure health at national scale with the ICMR-INDIAB study across 31 states and union territories. It has never pointed that capability at rare diseases.

One · Count them
India's first population-based, multi-centre study of how many Indians live with rare diseases, across regions, languages, and incomes, with genetic confirmation and a registry that feeds and strengthens the ICMR national registry rather than building a parallel one.
Two · Reach them
A national, AI-assisted virtual Centre of Excellence that extends the 15 physical centres to every district through the existing Ayushman Arogya Mandir primary-care network and the ABDM digital-health backbone, helping front-line doctors recognize warning signs, guiding families to the nearest specialist, and supporting caregivers in their own language. It supports doctors rather than replacing them, and it does not diagnose or prescribe on its own.
Three · Spend what is committed
Fix the bottleneck that keeps funds from patients, which is that the patients have never been found.
The ask in one line. Count India's rare-disease patients, then build recognition, support, and treatment that reach every district on India's existing rails, so that money already set aside stops lapsing while children die waiting.
Add your name

We, the undersigned, ask the Government to count and care for India's rare-disease patients

This petition is offered for signature by the organizations, physicians, scientists, and families of India's rare-disease community, and by international partners who stand with them. Organizations sign as formal cosignatories; individuals and organizations may also send a letter of solidarity. Endorsements are verified by email before public listing.

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Your email is used only to verify this endorsement and is never published. Verified names and organizations appear in the public cosigner roster maintained by the consortium. You may withdraw consent at any time by writing to the consortium.

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We will verify your endorsement by email before public listing. One more thing helps more than anything else: pass it on.

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The petition documents

Read and share the full petition

English (PDF)The Uncounted: full national petition with bibliography, 9 pages हिन्दी (PDF)दुर्लभ रोगों पर राष्ट्रीय याचिका, 9 पृष्ठ
Who we are

The consortium

The Rare and Orphan Diseases Consortium of India is a growing alliance of physicians, medical geneticists, patient advocacy organizations, public-health specialists, and industry and insurance leaders, convened by the rare-disease community with clinical partners across India.

Indian national umbrella organizations invited as founding cosignatories: Organization for Rare Diseases India (ORDI); Indian Organization for Rare Diseases (IORD); Foundation for Research on Rare Diseases and Disorders (FRRDD); Rare Diseases India Foundation; Centre for Health Ecologies and Technology (CHET).

Indian patient organizations: Thalassemics India; Federation of Indian Thalassemics; Thalassemia and Sickle Cell Society (Hyderabad); Sickle Cell Society of India; Hemophilia Federation (India); Cure SMA Foundation of India; Dystrophy Annihilation Research Trust (DART); Indian Association of Muscular Dystrophy; Lysosomal Storage Disorders Support Society (LSDSS); MERD India; Indian Prader-Willi Syndrome Association; Down Syndrome Federation of India; Indian Rett Syndrome Foundation; Fragile X Society India; Niemann-Pick India; World Without GNE Myopathy.

International organizations invited to endorse: Rare Diseases International; EURORDIS-Rare Diseases Europe; NORD (USA); Global Genes; Thalassaemia International Federation; World Federation of Hemophilia; World Duchenne Organization; International Prader-Willi Syndrome Organisation; APARDO; Beacon for Rare Diseases.

Physicians, medical geneticists, and scientists from India's Centres of Excellence and medical-genetics departments are invited to co-sign in their individual capacities.