Bengaluru: Experts urge registry, clinics for Huntington’s patients

Bengaluru: A conference on Huntington’s Disease was held at the Nimhans Convention Centre on Saturday. Titled ‘Advancing Science and Care: Unified Strategies for Huntington’s Disease’, it was organised by the Huntington’s Disease Society of India (HDSI).

The event aimed to raise awareness about the disease by bringing together global experts, researchers, scientists, caregivers, clinicians and policymakers, said Venkateswara Rao Koushik, chairman of HDSI.

“There is so little awareness about the disease in India that it isn’t even considered a rare disease. Compared to India, there is so much research happening in other countries. Several people in India are currently dealing with this ailment, but there is no registry. This needs to change,” Koushik told DH.

The day-long conference featured talks on several topics, such as ‘Mechanisms of Huntington protein transmission in the brain via two proteins’, ‘Genetic counselling and the family planning dilemma’, and ‘Living with Huntington’s Disease – overcoming challenges and a wishlist for a better life’.

At the conference, HDSI put forth three key demands — inclusion of Huntington’s Disease in the National Rare Disease Registry, establishment of multidisciplinary Huntington’s Disease clinics in major hospitals, and creation of a dedicated Huntington’s Disease patient registry.

“Families affected by Huntington’s Disease face an enormous burden without adequate medical or social support. 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,” added Koushik.