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India launched a registry of rare disease patients in 2017 but it is far from complete. Unlike the US, which has economic incentives for pharmaceutical companies under the Orphan Drug Act (to encourage development of drugs for diseases too rare to be worth pursuing otherwise), the Indian government does not offer such provision. Owing to countless generations of consanguineous and endogamous marriages – within extended families or within the same caste –that raise populations’ vulnerability to genetic disorders, the prevalence of rare diseases may be higher in some Indian ethnic groups. Newborn screening could diagnose many disorders at birth, since 80% of rare diseases are genetic. But barring a few Indian states, it is unavailable in government-run hospitals, where, in 2018, almost 55% of women gave birth.

Prasanna shirolArkasubhra ghoshDhara mamaniaSanofi genzymeOrganisation of rare diseases indiaResearch laboratoryTakeda pharmaceutical companyRare diseases indiaOrphan drug actParent project muscularபிரசன்னா ஷிரோல்தாரா மாமணியஆர்கநைஸேஶந் ஆஃப் ரேர் நோய்கள் இந்தியாஆராய்ச்சி ஆய்வகம்டாகேடா மருந்து நிறுவனம்ரேர் நோய்கள் இந்தியா