DATA STORY : Rare Diseases

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Rare diseases are often serious, chronic and life-threatening conditions. WHO defines a rare disease as often debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1000 population. However, different countries have their own definitions. A disease or disorder is defined as rare in India when it affects fewer than 1 in 2500 individuals. There may be as many as 7,000 rare diseases, individual diseases may be rare, the total number of people with a rare disease is large.

Causes- There are various causes of rare diseases, but still, the exact causes of many rare diseases are unknown. The common cause can be genetic, directly related with changes in genes or chromosomes.

Treatment- About 95% of rare diseases have no approved treatment even when a correct diagnosis is made. Where drugs are available, they are quite expensive as very few pharmaceutical companies globally manufacture drugs for rare diseases. For this reason, rare diseases are also called ‘orphan diseases’ and drugs to treat them are called “orphan drugs".

Steps by the government-

The Ministry of Health and Family Welfare, Government of India initially formulated a National Policy for Treatment of Rare Diseases (NPTRD) in July 2017 and in 2021 the policy was revised as National Policy for Rare Diseases 2021.

The Rare Diseases Policy aims to lower the high cost of treatment for rare diseases with the increased focus on indigenous research and a National Consortium is to be set up with the Department of Health Research, Ministry of Health & Family Welfare as convener.

The data used in the data story is collected from National health portal, web pages of NGOs and leading newspapers.