Rajiv Gandhi Centre for Biotechnology (RGCB) has announced that it will assist all district and taluk hospitals and family groups in Kerala to identify rare paediatric genetic diseases and provide them free genetic testing, support and counselling for these conditions affecting children.
This was announced by RGCB Director Prof. Chandrabhas Narayana, while hosting an awareness programme on Paediatric Rare Genetic Disorders to celebrate International Children’s Day. “By organising this awareness programme, RGCB tries to fulfil the mandate of International Children’s Day on the right to life, health, education and family life,” he added.
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 Paediatric Rare Genetic Disorders (http://praged.cdfd.org.in/), of which RGCB is an integral part,” Prof. Narayana said, expressing his full support to achieve the objectives of the project.
RGCB principal investigator Dr 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, Dr K. Thangaraj, Programme Coordinator and former Director, CDFD, Hyderabad, shared his extensive experience on population genetics and its significance in resolving rare disease condition.
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.
A short documentary, “Vision of the Blind Lady”, a brainchild of a passionate scientist, was also screened to spread awareness.