IGICH treats 100 children with rare diseases

The Indira Gandhi Institute of Child Health (IGICH), one of the eight national centres of excellence for treating rare diseases, has become the first to enrol and treat 100 children under the National Policy for Rare Diseases, 2021.

Rare diseases are a group of nearly 7,000 disorders, mostly caused by genetic alternations and largely affecting children. Most of these diseases do not have a specific treatment, with existing treatments being long-term and expensive.

Of the 100 children enrolled at the Centre of Human Genetics at IGICH, nearly 35 per cent have Group 3 rare diseases (requiring very high cost, lifelong therapy) and the rest have Group 2 diseases (needing long-term treatment at relatively low cost). Around Rs 9 crore has been used to treat them this year.

Dr Meenakshi Bhat, associate director at CHG, emphasised the importance of early diagnosis and appropriate treatment for these disorders.

Genetic testing for diagnosis has been offered to patients at IGICH for 15 years, she said. Over this period, 40,000 children were diagnosed and counselled at CHG.

IGICH director Prof Sanjay KS stressed the need for affordable and effective treatment for patients with rare
diseases.