ICMR-NIRRCH to offer free testing, counselling to tackle rare diseases

The ICMR-NIRRCH in Mumbai has launched a new Genetic Research Centre to provide free genetic testing and counselling services for rare diseases, benefiting millions of patients in India. The centre aims to offer early diagnosis and critical support, revolutionizing healthcare for vulnerable populations in the country.
Rare diseases are a significant health concern globally, affecting approximately 350 million patients, with India alone harboring 72-96 million patients. Recognizing the urgent need for intervention, the ICMR-NIRRCH has taken a proactive step towards addressing this pressing public health issue.
The Genetic Research Centre has been approved under the PCPNDT Act, 1994, to conduct genetic counselling and testing, providing a comprehensive approach to diagnosing rare genetic disorders. Currently operating in Maharashtra, the centre plans to extend its services to patients nationwide, ensuring universal access to essential healthcare services.
Dr. Geetanjali Sachdeva, Director of ICMR-NIRRCH, emphasized the significance of early diagnosis and timely interventions for rare diseases, highlighting the potential to transform lives, particularly for young individuals. With 95% of rare diseases lacking approved treatments, genetic testing and counselling play a crucial role in managing these conditions.
The centre’s focus on reaching out to special schools, hospitals, and the public underscores its commitment to raising awareness about rare diseases and enhancing uptake of essential testing and counselling services. By mitigating the societal burden of these diseases, the centre aims to contribute to the national goal of a healthy society with universal access to healthcare services.