Huntington's Disease Society of India

There is a need to confirm the diagnosis through genetic test because of the disorders that mimic HD. Genetic nature of the disease does not preclude a neurologist from treating the symptoms and improving the quality of life. Absence of family history does not rule out the diagnosis of HD. It is very much important to encourage multidisciplinary care for these patients starting with a psychiatry referral. Drugs that decrease chorea (neuroleptics/tetrabenazine) can cause parkinsonism or extrapyramidal symptoms. So it is a fine balancing of the doses to prevent either extremes. It may vary dependent on each patients pharmacokinetics and receptor dynamics. So regular follow up is recommended

A preliminary meeting of HD families and health care professionals happened in June 2018 at Bangalore for which 7 members from HD families discussed the idea of forming an organisation with health care professionals. Official approval of the society and the inaugural conference happened in August 2019 at NIMHANS. HDSI is supported by EHDN (European Huntington’s Disease Network), EHA (European Huntington Association), IHA (International Huntington Association) and other international bodies engaged with HD who share a similar vision. HDSI draws inspiration from them.

HDSI welcomes all the motivated HD families and professionals to contribute to the cause of HD welfare. Only with unity, commitment and team work, we can make a difference in the lives of those affected by HD. Let us own the cause and work relentlessly.

Our Vision and Mission

Our Vision & Mission Huntington’s Disease Society India is a non-profit organization formed with a broader vision of freeing the affected individuals from the sufferings of HD and empower them to lead a better life. Our mission is to address multiple concerns of the HD patients and families with several initiatives all culminating into a better quality of life for the patients with the existing therapies, guide and help the people at risk for HD and promoting research to find new solutions to HD.
HDSI aims to help the HD affected families in all possible fronts through the following:

To improve access to health care for all HD patients in India
To break the stigma, bring awareness about HD
To promote local self-help groups for HD
To promote centres for physical, mental and occupational rehabilitation of the patients
To establish National registry for HD patients
To promote PGT services to prevent vertical transmission
To provide special help to the underprivileged people affected by HD
To pursue patient advocacy and policy making
To promote basic and clinical research in the field of HD