Huntington’s Disease Society of India Calls for Urgent Policy Action

The Huntington’s Disease Society of India (HDSI) has urged immediate policy attention, structured care systems, and research support to address the challenges faced by thousands of families living with Huntington’s disease (HD), a rare inherited neurological disorder affecting movement, cognition, and behaviour.

At its 2nd International Conference at NIMHANS, Bengaluru, HDSI called on the Government of India and the Indian Council of Medical Research (ICMR) to recognize HD as a rare disease under the National Rare Disease Policy.

The society outlined three priorities: (1) inclusion of HD in the National Rare Disease Registry for recognition and research, (2) establishment of multidisciplinary HD clinics in major hospitals for integrated care, and (3) creation of a patient registry to track prevalence, progression, and care needs.

The event highlighted scientific advances, showcased student research, and, most importantly, amplified the voices of patients and families whose stories reinforced the urgent need for recognition and comprehensive support.

29-08-2025