Young researchers must shoulder responsibility of developing low-cost treatment for rare diseases: Niti Aayog member

Lauding significant milestones in India’s genetic research journey, V.K. Paul, NITI Aayog member, on Monday called upon young researchers to shoulder the responsibility of furthering the country’s contributions in developing low-cost treatments for rare as well as other genetic diseases.

He was speaking after inaugurating the 49th annual meeting and international conclave on neurogenetics organised by the Indian Society of Human Genetics (ISHG) at NIMHANS in Bengaluru. The conclave focussed on India’s advancements in neurogenetics and its healthcare applications.

Dr. Paul emphasised landmark contributions by Indian geneticists in discovering novel gene therapies for Sickle Cell Disease and small molecules for the treatment of some other rare genetic diseases. He lauded the efforts of Indian geneticists in significantly reducing the cost of treatment for rare genetic diseases.

Highlighting national collaborations that addressed rare genetic conditions, Dr. Paul announced the availability of life-saving drugs for thalassemia, Gaucher disease, Wilson’s disease, and sickle cell disease in children. “Over 40 million individuals have been screened for sickle cell anemia so far. India’s genetic research is driving innovation, positioning us as global leaders,” Dr. Paul said. 

NIMHANS Director Pratima Murthy marked the institute’s 50-year legacy with initiatives such as Tele-MANAS and the Karnataka-Brain Health Initiative. She also unveiled plans for an incubation centre to foster innovation and released commemorative stamps celebrating NIMHANS’ achievements.

Speaking on the genetic basis of brain disorders, particularly Autism Spectrum Disorder (ASD), Dr. Murthy said collaborative research under initiatives such as Accelerator Program for Discovery in Brain Disorders (ADBS) using stem cells, a programme funded by the Department of Biotechnology is crucial for advancing rare disease treatments.

ISHG president B.K. Thelma, who called upon students to make use of the opportunities through the conference, said early-career researchers should be motivated to embrace mentorship and collaboration.

Organising chairperson Monojit Debnath introduced eco-friendly initiatives – an early morning run and brainstorming sessions to encourage holistic participation and collaborations. Over 600 participants from different countries are attending the two-day conclave.