100 patients with rare genetic diseases enrolled for treatment at CHG-IGICH, Bengaluru

Centre for Human Genetics (CHG) and Indira Gandhi Institute of Child Health (IGICH), Bengaluru is India’s first Centre of Excellence to achieve this milestone 

Centre for Human Genetics (CHG) and Indira Gandhi Institute of Child Health (IGICH), the Centre of Excellence for Rare Diseases (COERD), Bengaluru celebrated a milestone event – 100 @ COERD, to commemorate the successful enrollment of 100 beneficiaries till August 2023 who have been provided treatment under the National Policy for Rare Diseases 2021 (NPRD 21). This is the first COERD in the country to achieve this landmark since the announcement of NPRD 21. 

Rare diseases are a group of disorders of nearly 7000 different disorders, most of which are caused by genetic alterations and the majority of the affected are children. Only a few of these diseases have a specific treatment. The treatment for most of these diseases are long-term, expensive and require careful monitoring by specialists. 

Dr Swasticharan, Additional DDG and Director EMR, Ministry of Health and Family Welfare, Government of India said there is a lot of scope of the National Rare Diseases Policy, the Centres of Excellence across the country and the crowdfunding portal developed by the Ministry of Health and Family Welfare, GOI, for enrollment of eligible patients.

Dr. Meenakshi Bhat, Associate Director, Centre of Human Genetics (CHG) spoke about the importance of early diagnosis and appropriate treatment for these disorders. Genetic testing to reach a diagnosis is being done at CHG and is offered free to all patients at IGICH since the last 15 years. She also highlighted that Karnataka was the first state to initiate treatment of rare diseases in 2016.

Among the 100 beneficiaries nearly 35% of them belong to Group 3 and 65% to Group 2 of NPRD. Around Rs. 9 crores has been utilized to provide treatment for these 100 beneficiaries during this year. COERD, CHG-IGICH, Bengaluru has been providing comprehensive care for the patients with rare genetic disorders. 

Prof Sanjay K S, Director, IGICH reiterated the commitment of IGICH towards the families with rare diseases. He also acknowledged the immense support provided by the state government of Karnataka. He emphasised the need of affordable, accessible and effective treatment for these patients.

In last one and half decade, nearly 40,000 families have been diagnosed and counselled at the services at the COERD, CHG-IGICH Bengaluru said Dr. Sanjeeva GN, Prof. of Pediatrics & Nodal Officer, COERD, Bengaluru. He stated that the National Policy for Rare Diseases was announced by the Ministry of Health and Family Welfare, Government of India in March 2021, under which, treatable rare diseases have been broadly categorized into 3 groups. A one-time financial assistance of up to Rs.50 Lakhs has become available for the treatment of eligible patients with rare diseases.