Why in News?
Recently, a 19-year-old child actress, Suhani Bhatnagar, died due to dermatomyositis, a rare disease
Dermatomyositis
- It is an uncommon inflammatory disease marked by muscle weakness and a distinctive skin rash.
- The condition can affect adults and children, affects more females than males.
- There's no cure for dermatomyositis.
Rare disease
- A disease is considered rare if it affects fewer than 200,000 people in the U.S. and fewer than 1 in 10,000 people in the European Union.
- Definition – According to WHO, Rare disease is a lifelong disease with a prevalence of 10 or fewer per 10,000 population.
- According to Organization of Rare Diseases India (ORDI) defined rare disease as a disease when it affects 1 in 5,000 people.
Rare Disease Day was observed on the last day of February i.e., 28th February (or 29 in leap years).
- Spread – It affect approximately 3.5% to 5.9% of the population.
- Causes – 72% of rare diseases are genetic, with over 7000 characterized by diverse disorders and symptoms.
Status in India
- India lacks a standard definition for rare diseases.
- Estimate suggests that about 8 crore-10 crore Indians suffer from one rare disease or another, over 75% are children.
- India accounts for one-third of the global rare disease incidence, with over 450 identified diseases.
- These range from widely known ones such as Spinal Muscular Atrophy and Gaucher’s disease to lesser-known ones such as Mucopolysaccharidosis type 1 and Whipple’s disease.
- Centres of Excellence – They are institutions identified by the central government under the National Policy for Rare Diseases (NPRD), 2021.
- Aim – To treat patients suffering from rare diseases actively.
- Currently, 63 rare diseases are included under NPRD on recommendation of Central Technical Committee for Rare Diseases (CTCRD).
Reference
The Hindu | Rare diseases
