Kerala institute to provide support to identify rare genetic disorders in kids

The Rajiv Gandhi Centre for Biotechnology (RGCB), an autonomous institute under the government of India, on Wednesday announced that it will assist all district and taluk hospitals and family groups in Kerala to identify rare pediatric genetic diseases and provide free genetic testing, support and counselling for children who require it.

This was announced by RGCB director Professor Chandrabhas Narayana, while hosting an awareness programme on Pediatric Rare Genetic Disorders to mark International Children’s Day.

“By organising this awareness programme, RGCB tries to fulfill the mandate of International Children’s Day on the right to life, health, education and family life,” said Narayana.

As per the Ministry of Health and Family Welfare statistics, around 72 to 96 million people suffer from some form of rare condition in India.

There are reported 7,000 rare conditions but as per the ICMR’s National Registry for Rare Diseases, only 4,000 rare diseases have so far been reported in the country.

Reports indicate that 80 per cent of rare diseases are genetic in origin, of which 70 per cent start in childhood.

“It is extremely important that these issues are understood, discussed and addressed by conducting awareness campaigns. It is heartening to note that Department of Biotechnology, Govt. of India, has initiated a nationwide mission mode programme on Pediatric Rare Genetic Disorders of which RGCB is an integral part,” said Narayana.

RGCB principal investigator Dr Moinak Banerjee appealed to all segments of society to be a part of this mission either through a clinical support group, family support group or volunteer support group to address the unique needs of children facing these rare conditions.