At the second HDSI International Conference held at NIMHANS, Bengaluru, patients, caregivers, and doctors urged the Union Health Ministry and ICMR to recognise Huntington’s disease (HD) as a rare disease under the National Policy for Rare Diseases (NPRD).
HD is a progressive neuropsychiatric genetic disorder that damages brain cells, leading to a decline in physical and mental abilities, often in middle age. Key symptoms include dementia-like cognitive decline, involuntary movements (chorea), psychological issues, and severe motor impairment. Despite its debilitating impact, HD remains excluded from India’s rare disease framework due to insufficient data and lack of structured support.
Participants highlighted the urgent need for multidisciplinary HD clinics in major hospitals, integrating neurologists, psychiatrists, physiotherapists, speech therapists, genetic counsellors, and social workers. Authorities are also considering establishing a specialised centre at Victoria Hospital, Bengaluru.
Rajani Parthasarathy, State Deputy Director (Mental Health), announced that a task force—including NIMHANS Director Dr. Pratima Murthy, Dementia India Alliance, and HDSI experts—will meet on August 25 to design an action plan for HD and other neurodegenerative disorders.
Dr. Murthy confirmed that NIMHANS has forwarded a proposal for HD’s inclusion in NPRD. Meanwhile, plans for a national HD patient registry are underway to gather real-world data on prevalence, progression, and care needs, which would guide policy, clinical trials, and patient support.
HDSI Chairman Venkateshwara Rao Koushik stressed that recognition under NPRD, combined with specialised clinics and registries, would provide much-needed relief to thousands of Indian families affected by HD.