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The Indian Scenario

In India, data on the prevalence of rare diseases is scarce, with most cases identified at tertiary hospitals. This lack of epidemiological data hinders understanding the true burden of rare diseases, complicates diagnosis, and makes it difficult to estimate the economic impact. While only a limited number of rare diseases have been reported, including conditions like Primary Immunodeficiency Disorders, Lysosomal Storage Disorders, and Cystic Fibrosis, there is an urgent need for systematic studies to better understand the scope and impact of rare diseases in the country.

Diagnosis of rare diseases

Early diagnosis of rare diseases is often delayed due to limited awareness among primary care physicians and inadequate diagnostic resources.

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Challenges in research and development

Access to effective treatment for rare diseases remains a significant challenge, with less than 5% of the 7,000-8,000 known

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Prohibitive cost of treatment

The high cost of treating rare diseases, known as "orphan diseases," creates significant barriers to access. Due to small patient populations, drug manu...

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The Indian Scenario

In India, data on the prevalence of rare diseases is scarce, with most cases identified at tertiary hospitals. This lack of epidemiological data hinders understanding

Read More