The Rajiv Gandhi Centre for Biotechnology (RGCB) will assist all district and taluk hospitals and family groups in Kerala to identify rare paediatric genetic diseases and provide families free genetic testing, support, and counselling.
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Hosting an awareness programme on Paediatric Rare Genetic Disorders on World Children’s Day on November 20, RGCB director Chandrabhas Narayana said the RGCB was trying to fulfil the mandate of World Children’s Day on children’s right to life, health, education, and family life.
As per the figures of the Ministry of Health and Family Welfare, 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% of rare diseases are genetic in origin, of which 70% has its beginnings in childhood.
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“The Department of Biotechnology has initiated a nationwide mission mode programme on Paediatric Rare Genetic Disorders (http://praged.cdfd.org.in/), of which RGCB is an integral part,” Dr. Narayana said.
RGCB principal investigator Moinak Banerjee appealed to all segments of society to be a part of this mission either through clinical support group, family support group, or volunteer support group, to address the unique needs of children facing these rare conditions.
On the occasion, K. Thangaraj, programme coordinator and former director, Centre for DNA Fingerprinting and Diagnostics (CDFD), Hyderabad, shared his experience on population genetics and its significance in resolving rare disease conditions.
The event was attended by several collaborating paediatricians and paediatric neurologists who shared their clinical experience on challenges in diagnosing rare paediatric disorders and the way forward.