How it all started
Huntington Disease Society Of India
Similar to many HD organisations, we too had a humble beginning with handful of individuals working in isolation who got connected by serendipity, thanks to the social media. HDSI is initiated by the members of HD families with the support of health care professionals involved in HD care which include neurologists, psychiatrists, physiotherapists, psychiatric social workers, Speech and swallowing therapists from NIMHANS. Founding members are from across the country who got connected through various media and worked collectively for about 2 years to form the society (see more in founding members link).
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 & 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
