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DAILY NEWS ANALYSIS
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07 May, 2021
2 Min Read
The common denominator of rare diseases is the infrequency of their occurrence in the human population. Often debilitating lifelong disease or disorder condition with a prevalence of 1 or less, per 1000 populations is defined by the World Health Organization (WHO) as a rare disease.
As per an estimate, there are 7,000 known rare diseases with an estimated 300 million patients in the world; 70 million are in India.
According to the Organization for Rare Diseases India, these include inherited cancers, autoimmune disorders, congenital malformations, Hirschsprung’s disease, Gaucher disease, cystic fibrosis, muscular dystrophies and Lysosomal Storage Disorders (LSDs).
They disproportionately impact children: 50% of new cases are in children and are responsible for 35% of deaths before the age of 1 year, 10% between the ages of 1 and 5 years and 12% between 5 and 15 years.
The impact on families is often catastrophic in terms of emotional as well as financial drain, the cost of treatment is prohibitively high.
Costs to help already-diagnosed patients might be in the range of ?80-?100 crore annually. If the Centre can extend the cost-sharing agreements that it has worked out with Kerala, Tamil Nadu and Karnataka, with other States too, its share of the annual costs will be halved.
D.K.Tempe Committee Report
Visit Aspire website for National Policy on Rare Diseases.
Source: The Hindu
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The Supreme Court of India recently gave a final three-week deadline to the Telangana Assembly Speaker to decide pending disqualification petitions against defecting MLAs under the Anti-Defection Law. What is the Anti-Defection Law? The Anti-Defection Law was introduced through the 52nd Amendment (1985), which added the Tenth Schedule to the
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A major disaster unfolded in East Jaintia Hills, Meghalaya, when at least 18 workers died following an explosion in an illegally operating rat-hole coal mine. This incident highlights the continued prevalence of rat-hole mining despite bans imposed by the National Green Tribunal (NGT) and the Supreme Court of India. Rat-hole mining is driven
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India’s aviation sector has grown rapidly, becoming a major economic success story. However, regulatory oversight has not evolved at the same pace. Data-driven monitoring of fares and market behavior is essential to ensure fair competition, prevent market abuse, and shift from reactive crisis management to proactive regulation. Challen
14 Mar, 26
Recently, a high-level committee on Union–State relations submitted its first report to the Government of Tamil Nadu. The report examines the distribution of powers and responsibilities between the Union and the States, highlighting ongoing debates regarding the balance between central authority and state autonomy. This discussion is clos
14 Mar, 26
The relationship between India and the United Arab Emirates has evolved from a traditional energy-based partnership into a comprehensive economic and strategic relationship. Over the years, strong political trust, growing trade, and expanding investments have transformed bilateral ties into a diversified economic corridor. The economic partnership
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