Bengaluru: The Huntington Disease Society of India (HDSI), at its 2nd International Conference held at the NIMHANS Convention Centre, urged the Government of India and the Indian Council of Medical Research (ICMR) to recognise Huntington’s Disease (HD) under the national rare disease policy. The society emphasised the need for urgent policy attention, structured care systems, and research support to address the growing challenges faced by families across the country.

The conference was inaugurated by Prof. K. Vijayraghavan, former Principal Scientific Adviser to the Prime Minister, and Prof. Pratima Murthy, Director, NIMHANS, along with other dignitaries.

Huntington’s Disease, a rare and inherited progressive neurological disorder, severely affects movement, cognition, and behavior. Despite its devastating impact, the condition continues to remain absent from India’s health policy framework due to a lack of official data and structured support mechanisms. During the two-day event, HDSI highlighted the urgent need for official recognition of the disease, the establishment of multidisciplinary clinics in major hospitals, and the creation of a dedicated patient registry to capture real-world data on prevalence, progression, and care needs. Such measures, the society said, would pave the way for evidence-based interventions and bring relief to thousands of families.

The conference also showcased the latest clinical and research advances on Huntington’s Disease through presentations by leading experts and a poster session featuring contributions from students. The most compelling moments came from patients and families who shared personal stories of resilience and caregiving, underscoring the urgent demand for recognition and support.

“Families affected by Huntington’s Disease face an enormous burden without adequate medical or social support,” said Venkateshwara Rao Koushik, Chairman of HDSI. “Recognition in the national rare disease framework, along with specialised clinics and a patient registry, will be a lifeline for thousands of families in India.”